Episode #122: Communication Access, Justice, and Ethics with Elissa Larkin

Interviewer info

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.

In this episode, Lyssa Rome interviews Elissa Larkin about her work to increase communication access within her hospital system via communication partner training programs and her dual role as a speech-language pathologist and bioethicist.

Guest info

Elissa Larkin, M.S., CCC-SLP, HEC-C is a Bioethicist and Research Speech-Language Pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. Elissa earned her Master of Science in Communication Disorders with bilingual certification (Spanish) at Arizona State University and completed advanced training in bioethics at Northwestern Medicine Center for Bioethics and Medical Humanities, subsequently earning national certification as a Healthcare Ethics Consultant. Elissa's areas of professional focus include applications of ethical frameworks to promote patient rights and shared-decision making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech-Language-Hearing Association Louis M. DiCarlo Award for Recent Clinical Achievement for her work in communication access education and advocacy.

Listener Take-aways

In today's episode you will:

• Understand the theory behind implementing communication access strategies at the institutional level in a variety of practice settings.
• Learn about some techniques to effectively teach supported communication to colleagues from different disciplines.
• Describe the impact on patients and rehab professionals of communication access.

Edited Transcript

Lyssa Rome

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech-language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Elissa Larkin.

Elissa is a bioethicist, certified healthcare bioethics consultant, and research speech language pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. She's also certified as a bilingual English/Spanish SLP. Her areas of professional focus include applications of ethical frameworks to promote patient rights and shared decision-making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech Language Hearing Association Louis M. DeCarlo award for recent clinical achievement for her work in communication access education and advocacy.

Elissa, I am so glad to be talking to you today. I'm really excited for this conversation.

Elissa Larkin

Thank you so much. Lyssa, I'm very excited too.

Lyssa Rome

I thought we could start by having you introduce yourself a little bit more.

Elissa Larkin

Okay, sure, as you said, my name is Elissa Larkin. My pronouns are she/her/hers. In terms of positionality, I am a white, cisgender, middle aged woman, and before we really jump in, I also want to acknowledge and describe the context I work in—as a very resourced research and rehabilitation hospital. I want to explicitly recognize that because a number of things I'll share were made possible by very generous mentors and institutional resources that I know are unique and not necessarily available everywhere. I'll try to offer examples from my experiences, and really hope there will be things people can pick and choose pieces from that may fit where they practice.

Lyssa Rome

Yeah, and having spoken with you about this, I think that there are things that clinicians in a variety of contexts will be able to take away. So you have this really interesting background in bioethics. It's unusual for people in our field, and I'm curious, how did you get there? Why did you decide to do that bioethics training, and how has that informed your practice?

Elissa Larkin

Thank you. What a wonderful question to start with, and I'm grateful for the way that path unfolded. In my clinical practice, as an SLP, I think it was often issues of justice that motivated me the most, alongside my patients and families. We have a very active and engaged ethics department within our hospital, and so I got to partner with the ethicists at times on cases where there were issues that arose for some of my patients with communication disabilities. I was fascinated by how the process worked and how much patient rights and preferences were really centered very genuinely.

At some point, I had the opportunity to do more training in a program that was designed for practicing clinicians—it was like, part time, over two years—arose, and I jumped at it. It was a wonderful grounding, kind of a broad overview and foundation of bioethics, principles and philosophies, theories, frameworks. And I felt like with each reading and class, honestly, Lyssa, I just there would be aha moments where it was like, "Oh, there's a name for that thing that I've been experiencing." Or, "Oh, this method of approaching a really complex, gray situation really helps make sense of it and gives you more of a place to start." I think sometimes in clinical practice, we can feel really swept up in all of these complex things happening. And we want to do something, but it's hard to know where to start or how to even make sense of everything that's going on. I just felt like the clinically oriented ethics training program really helped me with that. And then the more I studied it, the more I wanted to do something with it.

It happened that when I finished the program, the ethics department within my hospital had someone retire from a part-time position, and so I threw my hat in the ring for that, and they hired me for the part time role. They took me on, basically, and provided me kind with an on-the-job fellowship for more of the clinical bioethics practice. And it's just been a really meaningful learning process.

Another piece I think that is important for me is that the program, the Donnelly ethics program here, was founded in 1995 by a physical medicine and rehab physician who's also a disability rights advocate. That very much informed the shape of the program and just how it was embedded in our hospital system, how it operates, and certainly how I was then trained. And so it just really aligned with my own philosophy as an SLP, and there's just been a lot of dovetailing.

As I said, the bioethicists on the team before I joined, none of them were speech pathologists. One has a legal background. There was a neuropsychologist, and then a PhD bioethicist, more academically trained. But they would partner with primary SLPs when the patient needed communication accommodations. Once I came onto the team, there was also a lot of openness. They really embraced my expertise, and I've gotten to work on most of the cases where a patient needs communication accommodations. And they've also really embraced learning these strategies themselves, implementing them. None of my colleagues go to consults now without a clipboard and a Sharpie.

Lyssa Rome

Wow, which is just living the dream.

Elissa Larkin

Yeah, they're doing it. You know, they're really embracing it.

Lyssa Rome

You've talked just now about how communication access is a part of the ethics work that you do, right? And it's part of what you think about as a bioethicist. And so I'm wondering how that ties into the work that you've done in trying to broaden access within your hospital system, and maybe you could talk a little bit about what you have done to broaden that access?

Elissa Larkin

Sure. Yeah, so communication partner training has become really central to my practice, and this is a place where I think mentorship is a really important part of my story. I work in the Center for Aphasia Research and Treatment. Leora Cherney is the director of the center, and she has been a mentor to me since before I joined the center, when I was a full-time clinician on the floor. She's someone who makes herself very available to SLPs throughout the organization, and so she provided guidance and support when I was learning about communication partner training and wanting to figure out a way to address things more broadly, as you said.

I think for a long time we have been giving our colleagues fish. You know, it's like we share a patient who has communication needs, and they ask us for advice and modeling to accommodate that one patient's needs. And we do that, and it helps that one patient.

And at some point I realized I wanted to teach people to fish. And so I started thinking about how to do that, and I sort of had this incremental from sort of like mini shoestring projects with a colleague on the floor. We both went to a Supported Communication for Adults with Aphasia, presentation that our colleague, Edie Babbitt, also a generous mentor, gave for our institution as a course. She had gone to the Aphasia Institute and done the Train the Trainer certification. And my colleague and I walked out of there and said, we have to do something like this on the floor. We have to do it more than how we're just doing it in a mini way, within the one hour we get for family education before someone discharges. We need to do something more dedicated.

So my colleague Julie Carpenter and I developed this one-hour training for patients and their care partners, family, friends, whoever could come. We offered a full hour just focused on that, and that sort of began my process. Once we had success with that. We could, I mean, you could see the care partners learning to fish. I wanted to learn more. I wanted to learn how to do it better. I wanted to learn what was behind these trainings in theory. And so I asked for support from the hospital to also go and do the Train the Trainer certification at the Aphasia Institute. And they said, "Yes, as long as in return, we'll ask you to also do a webinar for us."

My grandmother was a career middle school teacher for over 30 years. She always said, "The best way to learn something is to teach someone else." So I think the combination of preparing and delivering that webinar and going to the Aphasia Institute and learning just what I was looking for: the theory that was behind things, what they've learned over time, really from experts, and learning their system, helped really grow my knowledge and skills and sort of overall mindset of how to tackle this problem, this big problem, and maybe a bigger way take a little bigger chip out of it.

One of the things that in that Train the Trainer experience that really struck me was they challenged all of us to think about the communication environments where we practice and the systems they're in, and look for opportunities to embed communication partner training. And for me, when I did that, I thought about our clinical ladders program, or professional development structure. You know that clinicians kind of enroll in and take these different electives to grow their skills, but it's in this sort of structured, supported way within the hospital.

We already had a champion model, which is an implementation science model, a way of spreading knowledge and skills more broadly, sort of clinician-to-clinician. And I thought, what if we could have a champion program for communication strategies or communication accommodations? And I started working on that. And again, I went to Leora, who was very supportive and helped me think through how to structure it, and we pitched it as a pilot. In 2017 Edie Babbitt also mentored me in that program. We sort of thought through a curriculum of, how could I try to take what I learned from the smaller communication trainings I'd done and do it in a broader way and over more time.

So it's a year-long program for rehabilitation clinicians, and it started with four clinicians, a small group, but we had all allied health disciplines, represented SLPs, OT, PT, and all levels of care within our organization. We had two inpatient clinicians, an outpatient clinician, and someone from our day rehab program.

Throughout the pilot, the things that I really tried to center in the curriculum were practice—hands-on practice—opportunities to reflect: How did that go? What might you do differently? You know, we video record it, watched video recordings, discussed. And then also, opportunities for clinicians to apply it in their own practice and reflect on that too.

So, you know, the idea was kind of, I did the initial Supported Conversation for Adults with Aphasia training in the beginning, and that was sort of foundational. And then each time there were two months or so in between meetings, and their job was to take what they learned in the meeting and go put it in a practice with their patients. And they kept a log of just like once every couple of weeks, one example where they used communication accommodations with patients. And how did it go? What was the clinical context? What did you do? How'd it go? And that was the fuel for the discussion to start the next meeting off, we'd all come back and share. I borrowed a phrase from a community member with aphasia who runs his own community group. He always starts with thorns and roses. And so that's what we would do in Communication Champions. You know, "What's been challenging and what's going well?" And then also we would problem solve together. If someone brought a challenge and said, "I could really use help," we would talk about it.

For me, something that was really rich about the experience was I learned a lot too, of course, especially from hearing how clinicians in other disciplines would tackle the problem. Once they have foundational knowledge, sometimes they approach something differently than I would as an SLP, in a way that I thought, "Oh, yeah, I think that'll work better. That totally makes sense."

We all learned a lot through that part of the process. So I think the program gives that foundational knowledge. They put it into practice. Halfway through, their job changes to focus on mentoring others. So they do a case study presentation to all their teammates, and kind of launch themselves as a Communication Champion. So they're presenting about a patient, hopefully the whole team kind of knows, so it's really relevant and engaging, is the idea. And they emphasize the communication accommodations they used in clinical practice and the impact that it had. And then they tell their teammates, "I'm in this program, I'm learning these skills, and I can be a resource for you."

And then the program really ends in helping the trainees get to a point where they're then thinking more broadly. We go from the examples of communication accommodations for patients with aphasia to other diagnoses, because people are in the program from all over the organization, we're working with very different patient populations, sometimes so accommodations for a person with locked in syndrome, accommodations for someone on a vent, all the different varieties, cognitive-communication accommodations, and then they think about the communication environment where they practice.

There's a wonderful article by Robin O'Halloran and colleagues from 2012. It's a metasynthesis of surveys done of various stakeholders, including patients with aphasia in an acute care setting and providers, as well as family members I believe, and collecting their input on communication facilitators and barriers. And then, you know, they came up with these six different categories. And so we read the article, and then the champions look at the environment where they work, because we know it can vary a lot across just one organization, which says a lot about how varied our patients' experiences can be, as well. And they break it down, what are the facilitators in my environment? What are barriers? And then we talk about it—is there any low hanging fruit? Are there any barriers that you could address that would be pretty easy to remedy, and are there any that would be really impactful to address?

And some of those trainees actually have gone on to do a project to address some of those barriers. We added a Communication Champions level two, where once you complete the program, if somebody wants to do basically an independent project, they can request support. And, you know, I provide mentorship if needed, I just support them however I can. And there have been some really neat things that have come out of that, too.

Lyssa Rome

It's amazing. It sounds like you've developed a really rich program, and I'm curious about how it's been received, what kind of feedback you've gotten from the people that you've trained in the hospital.

Elissa Larkin

Thank you. Yeah, every cohort I end with direct feedback from the trainees about the program, all aspects: "What went well? What could be better? Anything else we should add?" And one thing that consistently people have said is that the practice is really valuable. We have actually partnered with community members with aphasia. I've neglected to mention this is all over Zoom at this point, which makes it accessible for people from all parts of the hospital and for our community members.

So the practice, rather than role plays with each other, our community members with aphasia, Zoom in and have conversations and give direct feedback. "You did a good job speaking slowly." "Could you write more for me?" Things like that. And the clinicians have said that is not only really helpful, it helps them build confidence, and it feels really meaningful. And the community members have been so generous with their time, and they have also said they feel like not only is it fun for them, they also find it meaningful to feel like they're training clinicians who are going to work with other people with communication disabilities and maybe make things more accessible for them. So that's been, I think, a really important part of the program, and I'm so thankful that our community members are always up for being a part of it and giving their time that way and expertise for that matter.

Lyssa Rome

What about other examples of how this has played out for the people who you've trained?

Elissa Larkin

Yeah, I have to say, clinicians have shared some really powerful examples