Patients on ventilators have things to say, and no way to say them [PODCAST]

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Only 4 in 10 caregivers say a doctor asked how the patient prefers to communicate. The patients who cannot answer often have the most to report. Chris Ross is a speech-language pathologist and school administrator. This episode is based on her article “Communication access is a patient safety issue,” published on KevinMD. She spent 35 years giving nonverbal children a way to be understood, then woke from 12 days on ECMO with a tracheostomy and no way to say anything herself. You will hear what she tried when nobody on the unit knew sign language, what a respiratory therapist tore off a Kleenex box to give her, and why she still wonders whether a communication board would have eased her delirium. You will also hear about the chest tightness she could not report, what her hospital now hangs outside every room, and what she wants clinicians to ask a patient who communicates differently. Press play for what a patient on a ventilator is trying to tell you, and the free tool that lets them.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Chris Ross. She’s a speech-language pathologist and school administrator. Today’s KevinMD article is “Communication access is a patient safety issue.” Chris, welcome to the show.

Chris Ross: Thank you.

Kevin Pho: All right, let’s start by briefly sharing your story, and then we’ll talk about your KevinMD article.

Chris Ross: Great. So I have worked as a speech-language pathologist for thirty-five years. My primary focus in that area has been with children with complex needs, and often children who are nonverbal, so using multiple communication means to give them some sort of communication system. That’s just a little bit of background.

In 2020, when we were all shut down, I had what lots of people had happen to them. I came down with COVID. It was about two weeks at home. I just kept getting worse and ended up in the hospital. They said, “Yeah, you’ll probably be here three to five days.” That turned into two weeks in the ICU. At two weeks, I crashed and was put on a ventilator. I don’t remember this, but a day or two after that, I was put on ECMO. I spent twelve days on ECMO and have no memory of any of that.

They woke me up on December 18, 2020, and said, “You’ve been on ECMO for twelve days. You’re going to get a tracheostomy.” It was just so bizarre to me that I had been in this coma. I had lost two weeks of my life, essentially, but my professional brain was still working. I thought, “Oh yeah, I know what that is.” And wow, what an experience for an SLP to have. I thought, “This will make a really good article for the American Speech-Language-Hearing Association.”

Then I went back into some delirious state for about five days, on and off. During that time, I kept waiting for a speech-language pathologist to bring me some sort of communication board. Like I said, this is what I had spent my career doing, so I knew they were out there. That never happened. I’m fluent in American Sign Language, so I tried signing. Nobody knew any sign language at all. I think it was really frustrating for the staff that I was trying to use this form of communication that I had access to, but nobody understood it.

That went on from December 18 until I went to an LTAC on December 24. Somewhere in the next couple of days, one day just kind of blended into the next, and I don’t know what was day and what was night, a respiratory therapist said to me, “Here,” tore off the bottom of a Kleenex box, gave me a pen, and said, “Can you write?” I could, a little bit. I remember the pen feeling so heavy, like how can I hold this pen because it’s so heavy, but I could scratch out a little bit. Over the next few days, my family sent in a dry-erase board and a pen, and as I regained some strength, I could write a little bit. But it was just really disappointing. This career that I had had for thirty-five years, put in with our younger consumers and patients, wasn’t being offered to adults in critical care situations.

Kevin Pho: Now, without any means of communication, how did the hospital staff expect you to share any discomfort, share any pain? How were you expected to communicate without the assistance of any of these aids?

Chris Ross: Just gestures. I remember one time I was crying, and they said, “Is everything OK?” I didn’t have a way to ask the questions, “Tell me what has happened over the last two weeks.” I’ve done some research in speech and hearing science as well, so as a researcher, I wanted to know what was happening to me. I’m very curious now about delirium, and whether having some communication access in some way would have reduced my delirium, because I had such severe delirium for a very long time. So it was a lot of gesturing. One nurse had me trace letters into her hand so she would try to understand me.

Once I got to the LTAC, which I did not want to go to, working kind of health care adjacent in the field of speech-language pathology, I knew about this LTAC.

Kevin Pho: For those who aren’t familiar with an LTAC, tell us exactly what that is.

Chris Ross: It’s a long-term acute care hospital. I went there even though I was still very critically ill. I was still on a ventilator, and I needed to be weaned from the ventilator, and that’s what they did there. But I just knew the reputation of the LTAC. I did not want to be there, and I had no way to express that. To me, that probably still lingers as one of the biggest frustrations.

Kevin Pho: So you obviously are a speech-language pathologist. You knew exactly what tool you needed. It was a communication board. Tell us exactly what that board is. Is it simply a whiteboard? Are there any other options, technological options? You hear about things like iPads. What options are available for people in your situation?

Chris Ross: There are so many options out there, and I think that’s another thing that was frustrating. It could be something as simple as a board with the alphabet on it. Now, if you think of somebody who has been in a coma for a long time, cognitively they may not be all back intact yet, so spelling might not be an option, because that involves scanning and spelling as well. There are picture boards. There are several companies that make premade picture boards for hospital settings that would identify a picture of the most common needs within a hospital. On iPads, there are free programs for communication access in different settings. There’s also very, very advanced technology. For people with ALS and some of those neurodegenerative diseases, there are eye-gaze devices. They’re, you know, $15,000. You don’t expect those to be at every bedside. But when there are things you can print off the computer for free, something like that, I think, should be offered to everybody.

Kevin Pho: Now, in your article, you frame the lack of patient communication devices as a patient safety issue. Tell us more about that.

Chris Ross: Like I talked a little bit about with delirium, I was doing dangerous things when I was under. I pulled my IV out. I was trying to get out of bed. I still wonder if I would have experienced it to that extent if I had been able to communicate with somebody what my fears were or what my questions were. I don’t know. I was also moved hospitals when I was smack in the middle of this really severe delirium, and I am sure that somehow impacted how severe I was. But I remember feeling a tightness in my chest. I didn’t have a way to talk about it. Obviously, it wasn’t a heart issue, but having that sensation was really pretty scary. And just by gesturing, nobody could really tell what I was trying to communicate. If it had been something more serious, that was a real safety issue. When you come out of critical care, there are things happening in your body that you have to be able to express.

Kevin Pho: In your article, you wrote that only 4 in 10 caregivers say a doctor asks about communication preferences. Now, if you had a message to physicians, and obviously you have an audience of physicians here, just tell us the type of messages, the type of questions you want physicians and other clinicians to be asking patients who are unable to communicate.

Chris Ross: I think we’re talking about two different things here. One is acquired communication disorder, which was what I had, or people coming in with a preexisting communication disorder. We have deaf patients who come in, or people who are hard of hearing. With deaf patients, it’s pretty obvious if they’re using ASL and need ASL, and hopefully there are interpreters available. But if you have a hard-of-hearing patient, which, when we think about so much of our geriatric population, are hard of hearing, talk louder, be clear, be close, check for understanding. Those kinds of issues. I experienced that with my mom when she was in the hospital. I’d say she’s hard of hearing, and the provider wouldn’t change anything they were doing to communicate with her. If we have people with developmental disabilities, or poststroke, or something where their communication style is different, just be aware that there are different ways to communicate. Even if they’re asked, “What’s your preferred communication?” they might get a little bit of information from that. Listen to that, and change your behavior when you hear it.

Kevin Pho: Now, as far as you know, have things gotten better since that time you were hospitalized? It’s been five, six years since then. Do you feel that the issue of patient communication, or offering patient communication devices, has improved?

Chris Ross: At the hospital I was at, it has. I have stayed in touch with my critical care doctor. I know this is never the person you want to be, but I was the first outpatient at the medical center I was at. They hadn’t even started a program yet, and I had a doctor who was just willing to go out on a limb for me. I am grateful to him every day, and we’ve stayed in touch and talked about that. The last time I went there, they had communication boards, just the paper ones, hanging outside of every patient’s room. To me, I felt like, “OK, mission accomplished here.”

It’s interesting. I was just in a call that was more than a focus group. The University of Sydney is doing a real deep dive into this, and there were people from all over the world on the call. Several of the hospital-based speech pathologists said, “Yeah, those paper communication boards don’t work.” I said, “They worked for me. I needed that. Maybe they don’t work for everybody, but it’s something, and it’s easy.”

Kevin Pho: Great. If you were to replay the scenario in your mind again, and obviously I don’t want to take you back to that horrible time, let’s say in an ideal situation, what would you have liked to see happen? If the medical team was sensitive to your lack of communication aids, if this was a perfect scenario, what would have happened instead?

Chris Ross: I would love to see tablet-based communication systems available. You never want to put somebody in the position where they’re so passive that they’re only answering yes and no to things, but it’s better than nothing. You can go through twenty questions if you have to. Those devices or those programs are dynamic, and you can make them fit for what the basic needs are, with pictures and words. Again, just thinking about the cognitive tasks involved with spelling, that’s not accessible to everybody. I think it would be simple. I think tablets are affordable enough now that this could be something that’s really flying. Ohio State has a program, and I have to say I was not at Ohio State’s hospital, but they have a nurse practitioner who has worked long and hard for communication access in health care with the school of nursing there. It just really seems like it’s a systemic kind of issue. There are some systems that train their people in it, and they’re well aware of it, and other places it’s just not happening.

Kevin Pho: We’re talking to Chris Ross. She’s a speech-language pathologist and school administrator. Today’s KevinMD article is “Communication access is a patient safety issue.” Chris, let’s end as always with your take-home messages to the KevinMD audience.

Chris Ross: Just know that people in critical care who have communication differences or acquired communication disorders have things to communicate. They need a way to express what their thoughts are at that time.

Kevin Pho: Chris, thank you so much for sharing your story, time, and insight, and thanks again for coming on our show.

Chris Ross: Thank you.

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