Augmentative Communication and ALS: A conversation with John Costello

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John Costello, MA, is the director of Boston Children’s Hospital’s Augmentative Communication Program. Costello has been a speech-language pathologist specializing in the area of Augmentative and Alternative Communication at Boston Children’s Hospital for 30 years. He works with children who are non-speaking or whose speech is severely impaired.

For the past six years, Costello has also been working after hours and on weekends with adult patients with Amyotrophic Lateral Sclerosis (ALS). Now, thanks to the partnership of a private donor, Boston Children’s Hospital is transforming Costello’s efforts on behalf of the ALS community into a formal program — the Augmentative Communications Service for People with ALS at Boston Children’s Hospital.

Costello sits down with Thriving to discuss his work with children and how it expanded to giving people with ALS a voice.

Thriving: What is augmentative communication, and what role does it serve with patients at Boston Children’s?

Costello: Augmentative communication looks at supplementing or replacing speech when someone is unable to speak.

The Augmentative Communication Program at Boston Children’s has existed for nearly than 40 years. Our team is made up of speech-language pathologists as well as occupational therapists with an assistive technology background. Being a pediatric center, our mission has primarily been to work with children of all ages with complex communication needs.

Our program follows what we refer to as a “feature-match process” — meaning we look at who the person is, what their needs are, what their skills are — and then we match those to the best tools and technology. Recommendations typically include low-tech solutions, which may be combined with a speech-generating device, computer software, an alternative keyboard or mouse. Message banking is one solution that we consider for people with ALS.

Thriving: When did you begin message banking?

Costello: Twenty-five years ago, one of the nurses who ran our tracheostomy program came to us and said, “You know, there are kids who wake up in the ICU after surgery who are absolutely terrified, and they can’t communicate. It seems like the work you are doing outpatient could really benefit them. Would you ever be willing to come see patients in the ICU?”

I agreed to go up to the ICU one day to see some kids, thinking it would be a one-off. It very quickly became evident to me that for someone going through such emotion and pain and fear, the inability to speak at that moment just compounds it further.

We then began to look at and say, “Why are we waiting until a patient is at bedside and under the influence of medication, pain, sedation and fear to try to help?” I thought it would be really cool if kids could record their voices pre-operatively so that post-op they could wake up at bedside with technology mounted on their bed and have their own voice.

That was how we started an inpatient service in the ICU — now known as message banking — that remains one-of-a-kind and is still internationally recognized.

Thriving: How is message banking different than voice banking?

Costello: Voice banking focuses on trying to create a synthetic voice that sounds like one’s own voice. A person sits down and reads up to 2,000 nonsense phrases into a computer and then a program takes all of that and analyzes it and tries to make a synthesizer that sounds like one’s biological voice. While an evolving technology, to date, it’s very clearly a computer voice with pieces of one’s biological voice.

With message banking, we had people record meaningful messages in their own voice pre-op that they could use while experiencing a temporary loss of speech post-op. When I started message banking in the ICU, I had no idea that it was going to be as powerful as it was.

Families were moved to a point where they would say, “My child is critically ill, he looks ill, he doesn’t look like my child at all and yet I hear his voice saying, ‘Daddy hold my hand.’ Hearing his voice completely brings me back to knowing this is my child and feeling connected.” Medical staff said, ‘We see kids intubated in the ICU and we never get to know them, but when we hear a little girl say, ‘This isn’t fair!’ in her voice, we get a sense of who she is.” And patients would repeatedly say how different it was to be able to communicate post-operatively.

Thriving: ALS is a disease that affects adults. How did you come to work with that population?

Costello: About six years ago, I was speaking about message banking at a conference on pediatric end of life and communication, and the speech pathologist from the ALS clinic at Massachusetts General Hospital (MGH) came up to me and said, “Can we send our patients to your program at Boston Children’s?” I said, “Sure, if you have a few, send them.”

MGH was very happy with the ALS patients we saw and kept sending us more. At some point we wondered if we could do the same thing with them that we were doing with kids in the ICU. We had learned about the power of one’s own voice and thought, “What if we could work with MGH to send people to us much earlier in the diagnosis, before they lost the ability to speak?” We knew that — unlike the patients in the ICU — people with ALS lose their ability to speak. It will be gone 100 percent.

We were able to start seeing patients with ALS earlier, and apply this whole idea of message banking. I wanted people to start to record as early as possible but I knew that with a life-determining disease like ALS, the last thing they’re going to do is get on Amazon and order a voice recorder. So I was buying them myself on my Amex. I had the support of Boston Children’s, but not the budget.

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Stephen Winthrop banking messages with Costello

Thriving: What types of messages do you try to capture?

Costello: If you ask people around you, there are things that you say and do or the way you say or do things that are so characteristic of you that you don’t even know, but the people who know you well do — that’s what we try to capture. I mean things like, “I’m so proud of you” or “I love you” or “Get out of my face” or “You annoy me.”

I learned a lot from being with people in the moment. I was working with a 14-year-old kid in our ICU. I was meeting him pre-operatively. He was recording a bunch of messages and in my opinion at the time he was being a silly teenager. He started recording these really silly songs including this birdcall. I came so close to saying, “You know you have to take this seriously.” And I just left it because there was still some extra space on the recorder.

Post-operatively, I went to his ICU bed. He’s there and the technology is loaded at his bed. His mom’s there, his dad’s there, his brother’s there and his best friend’s there. This 14-year-old pushes the birdcall sound and in unison, all people in the room do it back. And I thought, “Wow. Because it didn’t make sense to me and I thought it was meaningless, I almost eliminated this thing that was clearly such an incredible means of social connection for him.”

That experience really helped me define the term “legacy messages” and why they are so important. Legacy message are these things that are a reflection of you whether they’re meaningful to other people or not. We can’t change someone’s medical diagnosis. But we can support people to maintain dignity, control and social connectedness while expressing their true selves and remaining active members of the world around them. After all, communication is the thread that connects us all.

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Costello reviewing banked messages with Todd Quinn

Thriving: How can other augmentative communication tools aside from message banking affect the quality of life of people with ALS?

Costello: Although technology is wonderful, for many patients with ALS there are situations in which technology cannot be easily used. For example, many have told me that when they get into bed at night, it all falls apart. They tell me, “My positioning is bad, my chin is tucked, and my breath support is poor. It is so frustrating because I can try to say 10 times, ‘please put a pillow under my leg’ and people don’t get it.”

So we started developing low-tech/quick access and no-tech tools that turned out to be remarkably powerful contributions to supporting people. In the last days of life of one of my patients with ALS named Maria, she completely directed people to reposition her when she couldn’t breathe. Even the medical team said she shouldn’t be capable of doing what she was doing, because of those simple tools that Maria was integral in creating.

Learn more about Augmentative Communications at Boston Children’s Hospital.