Finding a voice at the most critical time
In the summer of 2014, 68-year-old St. Thomas resident Bob Henry was having a hard time keeping his breath. Though he received medical attention for this mysterious difficulty on several occasions, on one morning his situation became a lot more serious.
“He woke up unable to swallow or breathe,” his wife Lenore says of the frightening incident.
Immediately admitted to his local hospital, Bob was soon transferred to the Intensive Care Unit (ICU) at LHSC’s University Hospital where he was diagnosed with Myasthenia Gravis – a chronic autoimmune neuromuscular condition that affects voluntary muscles.
Basic tasks like eating, speaking, and even breathing were exhausting for Bob. His muscle weakness, coupled with the tubes required for ventilation and feeding made it impossible for Bob to speak.
“I could think clearly and I could hear clearly,” says Bob. “But I could not talk, which was very difficult.”
Like Bob, many ICU patients are unable to verbally communicate at this most critical time when they most wish to be heard by their health-care team and family.
“At a time when critical decisions are being made on behalf of patients, their condition often prohibits their ability to ask questions, express their wishes, or speak to their families,” says Emily Barrett, a speech-language pathologist at LHSC.
Bob first used traditional, non-verbal communication techniques such as tracing letters of the alphabet on his stomach to form words, and pointing to the letters on a letter board. But he soon became frustrated and fatigued by the amount of time required to trace sentences and the occasional inability of others to understand.
At one point, Bob tried a pad of paper and a pen, but his hand tremor made it impossible for him to write legibly or stay on the page.
“I was trying to communicate my needs and wants, but people couldn’t always figure out what I was saying,” he explains. “I had to take a whole new look at talking and trying to say what I needed.”
Then, last November, a new tool came along that made Bob – a retired computer programmer and project manager – light up with hope.
Emily approached Bob and asked if he would like to be involved in a new Pilot Project exploring the usefulness of specially modified iPads to help patients in the ICU communicate with staff and family. Bob eagerly agreed – and what happened next opened up a whole new world for him.
Using a uniquely designed program called ‘ICU Talk,’ played on software called ‘The Grid,’ Bob was able to use the iPad to quickly communicate ideas, ask for assistance and greet his visitors by tapping a finger on one of the pre-programmed buttons, which had been customized to include his common requests and the names of those he interacted with regularly.
After receiving the iPad, the struggle to communicate eased. He began to actively engage with his health-care team, family and visitors.
“When Bob communicated with his letter board, every message was a struggle,” says Emily. “But with the iPad, I got to see him engage more in decisions with his health-care team. Being given a voice can be very powerful and very significant so that was really exciting to watch and be a part of.”
“The iPad made my progress better because I was able to communicate much more easily,” says Bob, adding that he was also able to give important information to his wife on insurance, finances and household affairs. “I’d have discussions with my wife about things that hadn’t been done before this happened,” he says.
Using his technological background and experience as a patient, Bob also helped to take the technology one step further. He provided insight and ideas on modifying the iPad so it was more effective. He leveraged the ‘Notes’ application to track all aspects of his care, including his medications, exercises and important discussions.
The iPad also provided Bob with an unexpected but important outlet for his unique sense of humor. He would write the beginning of a joke and encourage staff to adlib the ending because, “Laughter is the best medicine,” he says.
Now that Bob’s condition has improved and he is back at home, he has relinquished the iPad back to the ICU. Armed with his own personal iPad mini, he continues to track his journey to recovery.
He’s also become an advocate for the iPad project – and is able to look back on one of the gravest periods of his life with a sense of pride.
“I’m just so glad that I was able to contribute,” he says of being a part of the project and his active involvement in improving the technology.
“The project helped me and I’m glad that I could play a part in making sure it helps others. It’s bigger than me now.”