How A Deaf Advisory Group Is Changing Healthcare

IRA FLATOW: This is Science Friday. I’m Ira Flatow. A visit to the hospital can be a stressful experience, right? There is, of course, the health condition that brought you there, but it can be a challenge to communicate and receive information clearly with a constantly changing staff of nurses and doctors.

Now, I want you to imagine that experience while deaf. Yes, many deaf patients report never getting an interpreter and being misdiagnosed and mistreated as a result, even though the Americans with Disabilities Act mandates that deaf patients receive interpreter assistance. But the good news is that one hospital is changing its approach to caring for deaf patients by listening to what they need.

In 2022, the University of Utah Health convened a panel made up of deaf patients who advised the hospital about how it can best care for them. And joining me to talk today about the program are my guests, Dr. Michelle Litchman, Medical Director of Intensive Diabetes Education and Support Program at the University of Utah, and Tamiko Rafeek, a member of the group Deaf Diabetes Can Together. Welcome both of you to Science Friday.

MICHELLE LITCHMAN: Thanks for having me here. I appreciate it.

TAMIKO RAFEEK: Thank you.

IRA FLATOW: Nice to have you. And just to note, to say again that this event was recorded as part of a live Zoom call-in, and you will hear Tamiko’s words through an interpreter who will also be interpreting for deaf and hard of hearing people, who will ask questions throughout the interview.

Let me get right to my first question. Tamiko, can you tell us about the experience you had when you were diagnosed with diabetes in the hospital.

TAMIKO RAFEEK: Sure. So it happened that I was in the hospital because I was feeling very, very ill. I went in and I said, hey, I am going to need an interpreter. And they said, OK, we’re going to look for one. But they brought in a VRI, Video Relay Interpreter. And what that is, it’s a device on a screen, sort of like an iPad. And I said, no, I would prefer an in-person interpreter. And they said, OK, well, we’ll find someone later. And I said, OK.

But I was very, very sick that day. I was just feeling so unwell. The communication was failing. And I was in the hospital just waiting and waiting. Nurses were coming in trying to talk to me, and I wasn’t understanding. I was trying to tell them how I was feeling. I was very, very pale. And again, here I am just waiting for an interpreter. And they keep bringing this iPad to me.

And my daughter was sitting with me at that time. She was about between eight or 10 years old. And they wanted her to interpret. And I said, no, she’s too young. This is my daughter. She shouldn’t be interpreting for me. And there was a moment that I felt like I need to be able to talk to the doctor and the nurses that are coming in and out of my room and it just wasn’t happening.

I felt so terrible. It feels like my whole world was crashing in. I didn’t know what was wrong with me. I didn’t know if it was a heart problem. They kept taking my blood pressure and doing all these tests. And they’re telling me I need to stay two nights in the hospital. And no one let me know why.

And then it was not until I finally got out of the hospital and I was reading my discharge papers that I realized I was diagnosed with diabetes. And I had no idea what that even meant. There was really no information specifically for deaf people. So I couldn’t find out how I needed to approach this situation. And it was just– it was a terrible experience. So it became a big, big problem, and it still is a big problem in the US for deaf people.

IRA FLATOW: Wow, that was an awful experience, Tamiko. We feel for you. Thank you for relating that to us. Michelle, you study diabetes. Can you tell us more about the link between that and deafness?

MICHELLE LITCHMAN: Sure. So deaf people can get type 1 or type 2 diabetes, but there’s also other conditions, one being maternally-inherited deafness and diabetes where they’re linked. You get this double whammy where you experience being deaf and also experience having diabetes. But I want to also add that there’s a higher incidence of diabetes because there’s a lack of information access. Tamiko described it really well with her own experience.

But when you don’t have access to information, it’s really hard to know what you need to do to maybe prevent diabetes or decrease your risk for diabetes. That’s quite problematic.

IRA FLATOW: Very interesting. Michelle, you’re a CODA, C-O-D-A, a Child of Deaf Adults. And now you research diabetes. What was your experience– your experience– like watching and helping family members trying to navigate the health care system. We heard about what Tamiko went through.

MICHELLE LITCHMAN: Yeah, so I grew up interpreting occasionally for my deaf mom when my dad was at work. And being eight or nine, that’s a challenging experience because you don’t always understand everything that is being said in the clinical setting.

And I’ll add that a few years ago, my aunt was in the hospital. And she went in for an infection and asked for an interpreter. She was advocating for herself. And the hospital told her, we’re only going to provide an interpreter when the doctor comes in and makes their rounds.

And the thing is that when you’re a patient in the hospital, you need to communicate with lots of people. And there was an instance where she was going like this and the nurse actually wasn’t quite interpreting that correctly. She brought in some water. She brought in a blanket.

And then finally, I had another aunt walk in the door who was hearing and said, you know what, she’s trying to tell you that she can’t breathe. You need to get on this. And she actually died later on in that hospitalization. And we just know that it could have been prevented. We knew that had she had an interpreter that full time, there could have been something done more immediately to help her situation.

And it shouldn’t be the reliance on family members because not everybody has family members that are able to be in the hospital with you to be those interpreters and nor should they have to be the interpreters. There’s a law, as you mentioned earlier, that requires that interpreters be provided if it’s requested.

IRA FLATOW: Yeah, that’s a terrible experience to recount. Thank you for helping us understand it. And as you say, and as I said earlier, the ADA requires that hospitals provide interpreters for deaf patients, but they often fail at doing this. Can you tell us why that is?

MICHELLE LITCHMAN: Yeah, so the statistic is 50% of the time when an interpreter is requested by a deaf individual, it’s not provided. That’s half of the time. And my experience with my own family members has been that they don’t know how to schedule an interpreter, or they are concerned about the expense, or they try to push it on a family member– can you just bring someone with you and your family to do the interpreting? Maybe it’s that they’re not familiar with the law, but they’re definitely not educated to the point where they know how to handle working with the deaf community.

IRA FLATOW: Wow. That’s amazing. I know, Michelle, you and others helped form the Deaf Community Advisory Board. Sounds really interesting and important. Tell me– tell all of us what the goal was here.

MICHELLE LITCHMAN: So one of the things that’s really important is that we don’t build things for people without their input. And so we wanted a Deaf Community Advisory Board that was national because we know that there can be regional signs and different experiences across the United States. So our community board is all over the country from California to Texas, to Maryland, to Wisconsin. And really the goal was for them to guide us in developing a diabetes education intervention that would work for them.

And so what we did is we sat together over 10 meetings in seven months, and they really described what that program would need to look like for it to be effective for them. And so it was really deaf-led the entire time, and then us figuring out, well, how can we make sure that those pieces get put together. And then we’d go back with what we had built, and they would give us feedback, this works or this doesn’t. And Tamiko was a part of that board who was so critical in making sure that we know how to build something.

IRA FLATOW: And I want to ask Tamiko about that. What were the sorts of things that you and the others suggested the hospital implement, because you should know better than anybody else.

TAMIKO RAFEEK: Yes. So we developed an ASL glossary, not just with ASL terms, but we modified and helped design the program and what it looks like because some deaf people do have visual problems as well. So we tried to accommodate all people within the deaf community, those who may have low vision and things like that.

And you may look on your phone and be able to click on a video, and then understand what a term is, and that could be really, really helpful for some deaf people, because some deaf people have various degrees of English proficiency. And so Deaf Diabetes Can Together is really amazing. We’ve worked so well as a team. Honestly, we’ve become a family. We’re supporting each other. And we’re learning how we can really improve access for all deaf people all over the US.

IRA FLATOW: That’s great to hear. Now, Michelle, I understand that you want to set up programs at the University of Utah Health for other communities, not just the deaf community. Tell me why you’d like to do that.

MICHELLE LITCHMAN: Well, so we know that whenever there’s a language difference or a cultural difference, that it can actually impact the education that someone receives, and sometimes a misdiagnosis can even happen. And so one of the things that we have worked on is providing this program in Spanish language. And we’ve done that for rural communities by telehealth in Colorado. And we’re also in the process of setting this up for a Pacific Islander Native Hawaiian community as well.

IRA FLATOW: Tamiko, tell us what you would like to see. What are your next steps and big dreams for this program?

TAMIKO RAFEEK: So my vision for this program is I just want to change the health care system. We want to really promote education within the staff and the medical doctors and nurses about what it means to provide interpreter services.

We need interpreters in health care, and to let them know that we don’t like the VRI, Video Relay Interpreters, on the iPads. It’s not the best option. It’s not always successful. And the reason behind that is a lot of times the Wi-Fi is not very clear. There’s a lot of lag time. And when you’re in an emergency, it’s impossible to be able to set up this iPad and call an interpreter when you have a deaf patient who’s in real distress. It’s just not successful for us.

And also, we need more interpreters who are familiar with those health terminology, such as insulin and insulin pumps. A lot of interpreters are not actually aware of that. So we need some more specialty training programs. So we really want to encourage health care systems to please hire more interpreters– in-person interpreters– for all deaf patients.

IRA FLATOW: One question about this– and let me bring this to you, Michelle– are there enough interpreters around? Tamiko says let’s hire more of them. But could you find them if you wanted to?

MICHELLE LITCHMAN: Yeah, it’s a great question. So one of the things that happened during the pandemic is some interpreters changed their job and they weren’t interpreters anymore. And then the second thing that happened was because we were in virtual environments, some interpreters decided that they would only do virtual appointments.

And as you heard from Tamiko, many deaf people prefer in-person appointments. And so there’s this kind of challenge of trying to find someone who will actually physically come on location. And so, yes, we do need more interpreters that will interpret for ASL, absolutely.

IRA FLATOW: OK. Thank you both. We’ve had some really good foundation to understand what’s happening. And now we have some great questions coming in from our Zoom audience. Jessica has a question about being the best advocate for patients. Jessica, go ahead and ask your question.

JESSICA: Yeah. Thank you so much for taking my question and for being here. I am an RN at my local hospital in Northern California. And I really appreciate everyone sharing these eye-opening perspectives and experiences. And I’m just wondering what advice you might have for me on being a better patient advocate, specifically what laws and policies, et cetera, I could reference while advocating to have a stronger impact to the powers that be.

MICHELLE LITCHMAN: I’m so glad that you’re an RN, because we actually need more nursing staff advocating for deaf individuals. So one thing that we saw in some of the research that we did is that, in some instances, clinical staff actually have more power in advocating than deaf individuals, which is absolutely sad and ridiculous because deaf people should be able to say, I need an interpreter. And then the American Disabilities Act says they’ve requested an interpreter and they should be able to receive one.

But we notice that when someone from the nursing field or other medical field actually stepped up and said, we need this interpreter, we need them in person, that the system– the health care system was more likely to listen. And so it’s really important to advocate for your patient on what they want.

And then on the flip side, we need systems to listen to deaf people. So whoever is running the show within different health care systems, we need to make sure that they have language services in place so that they can make sure that they’re provided to deaf individuals.

In my own state– I live here in Utah– my mom requested an interpreter just a few weeks ago. And she waited on– while the front desk person was trying to figure out what to do. And that front desk person talked to the physician there and then came back on the call with my mom and said, you know what, the doctor just wishes you would go somewhere else. And that’s absolutely ridiculous and unacceptable. We should not be deciding who gets care where. And so it’s really important for deaf people to be able to get the care that they need. And that ADA law is in place and it needs to be followed.

IRA FLATOW: Tamiko, you’ve been through this. What do you tell our RN who has asked these questions about being a patient advocate? What laws and policies or how to get something done?

TAMIKO RAFEEK: Yeah, so with my experience with, like I said, my daughter– she’s a CODA as well– the nurse will try to ask my daughter a question, and I’ll interrupt and say, excuse me, the ADA law requires you to follow my request. And you cannot use my daughter, or a brother, or sister, or family member to be an interpreter. And occasionally they’ll try to fight that. And I’ll say, no, this is the law.

So I just wish maybe that there was a brochure or something small with the ADA law on it that had the rules very clearly that we could show health care providers. Just something very, very simple that it’s easy to use, easy to read, and that they understand that they have an obligation to follow that.

IRA FLATOW: All right, let’s go to another question– question from Raj. I’ll read his question. How could doctors prepare better for a scheduled visit? And what would make you feel more comfortable to develop rapport with your doctor? Tamiko, you have any thoughts on that?

TAMIKO RAFEEK: Yes, I wish that they would have empathy. Really the number one top priority is just patience. It does take a little bit more time to make sure that that deaf patient truly understands what they’re saying because then that just provides such a better environment for the deaf person, instead of a doctor just sitting down and saying, OK, you have diabetes, you need to do this, this, and this. And then I’m sitting there wondering what he said. I didn’t understand.

So if doctors could just have that connection, have that empathy, and take the time to explain things to me, then I would keep that same doctor forever. Instead a lot of deaf people will travel to other doctors to try to figure out what’s going on and try to go to a doctor who actually explains things. That’s the kind of doctor that we need.

IRA FLATOW: This has been a really, really great discussion. I’ve learned a lot. I’m sure all of you have. I want to thank Tamiko and Michelle for taking time to talk with us.

MICHELLE LITCHMAN: Thank you.

TAMIKO RAFEEK: Thank you.

IRA FLATOW: Thank you both. I also want to thank Lacey Voris and Kelsey Jansen for helping us out with interpretation. Thank you both for taking time to be with us. That was Dr. Michelle Litchman, Medical Director of Intensive Diabetes Education and Support Program at the University of Utah, and Tamiko Rafeek, member of Deaf Diabetes Can Together.

Also, if you are deaf and have diabetes and want to sign up for Deaf Diabetes Can Together, email Michelle and her team at ddct@utah.edu. Also, thanks to Lacey Voris and Kelsey Jansen. for helping us out with interpretation.

And if you want to watch the full version of this interview, which features more audience questions and our interpreters signing, you can head to sciencefriday.com/deafhealthcare, sciencefriday.com/deafhealthcare, where you’ll also find a transcript of this conversation and a wonderful short film profiling the program.

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