Speech pathologist John Costello was leading a session at a conference back in 2009 about the work he was doing at Boston Children’s Hospital with pediatric patients who were temporarily unable to speak after a surgical procedure. He described how he’d come up with the idea to have the patients meet with a speech pathologist prior to surgery to record messages in their own voices. When the patients would wake up in the intensive care unit, they’d have technology at their bedside that allowed them to press a button and play these prerecorded messages. This idea, called “message banking,” was innovative at the time.
And it was powerful: Parents and children said it helped them maintain a connection through the time when their children could not speak.
After Costello finished the session at the conference, a Massachusetts General Hospital speech pathologist focused on Lou Gehrig's disease approached him and asked if he would be willing to see some of the hospital's patients. Despite the fact that the pediatric facility was busy, and with a long waiting list, he agreed to see the additional ALS patients, and the results have been tremendous.
“We’ve been working with patients who need augmentative communication since 1985,” says Howard Shane, director of the Center for Communication Enhancement at Boston Children’s Hospital. “But John has really moved it up a notch. He’s so dedicated to what he’s doing, and he’s a great clinician.”
Once they began, it became “abundantly evident” to Costello that “there is so much that needs to be done” for patients with ALS, who are faced with the real possibility of losing speech permanently. “We thought, if we could meet people early enough in the disease process, they could bank messages in their actual voices,” he says.
“For people who have ALS, things are being taken away from them at every turn,” says Costello. “They’re losing motor control, the ability to eat, the ability to dress oneself, the ability to walk, to talk, and eventually to breathe independently. We’ve tried to focus, in the face of this horrible disease, on how we can support people to preserve self, to be in control.”
To do this, he provides them with portable recorders they can take home to record messages in realtime as they think of them. “When people have to sit in front of the computer with a mic in front of them and think of all the things they want to say — that’s hard,” he explains. “I think the way to record really meaningful messages is to do it through a dynamic process, in real time, throughout the day.”
Giving patients a legacy
Often, the most important messages that patients bank are the most personal — the ones that “are a real reflection of your authentic self,” he says. Costello calls these “legacy” messages. “When you say them now, people associate them with you,” says Costello. For example, one of Costello’s patients recorded himself saying, “A-ha!” His daughters laughed and one said, “That’s just perfect, Dad,” and explained to Costello that in that one word, with a specific intonation, her father had conveyed, “I hear what you’re saying and I completely disagree, but I’m not going to interfere.”
Costello is part of a team at Boston Children’s that includes speech-language pathologists and occupational therapists with special expertise in using assistive technology. They work hard to help patients develop a communication system that will serve their needs in the present as well as in the future — with message banking as an important part of this.
But the team’s ability to serve adults with ALS has been limited by logistics; there are only so many hours in the day, and the program treats pediatric patients as well. Plus, once a patient’s disease progresses, they can no longer come to the clinic, requiring home visits on evenings and weekends. The clinicians cared for the most critical patients, using their personal time to do it, but haven’t been able to make the program available to everyone who needs it.
A prominent patient gives back
One of the program’s patients, Jay Fishman, former CEO and current chairman of financial company Travelers, was so moved by the dedication and passion of Costello and his team that he and his wife Randy made a $1.5 million gift to help Boston Children’s Hospital establish a formal augmentative communication program for adults with ALS. Travelers employees, board members and other corporate and nonprofit donors also donated a total of nearly $4 million. Boston Children’s aims to raise $10 million overall to establish a permanent endowment for the program, which Costello will direct.
The program has already hired two additional staff members dedicated exclusively to providing services to people with ALS. “We are now able to look at broadening the number of people we see, and hopefully continuing to provide the tools and strategies that people need throughout this disease process,” says Costello. The team hopes not only to greatly expand the number of patients in the program, but also to train other ALS clinics on how to provide these services to their patients.
Costello praises Boston Children’s for its flexibility and support in embracing the program’s aims from its earliest days. “We’ve been able to create a program that isn’t just me, and it isn’t just message banking,” he says. “It’s the really big picture of looking at physical access, control, communication throughout the course of the disease, and working with families. I’m deeply grateful to my colleagues who were able to step up and figure out how to be innovative, and to the hospital’s leadership in facilitating that to happen.”
Shane says the feedback from patients and families has been profound. “It’s so important because it preserves something that’s such a critical part of who they are,” he says. “John is very caring. He’s gotten very deeply involved with the families and really understands their needs and gives them an incredible amount of support. Nobody is more devoted to their patients than he.”