A Voice for the Voiceless

Famed motivational speaker Jim Rohn once said, “effective communication is 20% what you know, and 80% how you feel about what you know.” For those facing health care decisions at the end of their lives, effectively communicating how they feel can be hard; and for those trying to do so without a voice, it can be next to impossible.

Many seniors facing end-of-life decisions are battling conditions that render them speechless, and sometimes, too weak to rely on handwritten words. For example, a person diagnosed with ALS (also known as Lou Gehrig’s disease) may be unable to express their wishes in conventional ways due to complications related to their illness. This can be a huge challenge for the patient, the patient’s family, and the medical team charged with providing care.

To help combat this problem, caregivers and medical professionals often turn to Augmentative and Alternative Communication (AAC) tools, which serve to aid, or in some cases replace, vocal speech. There are many different forms of assistive devices, ranging from low-tech or no-tech, to mid-tech, to high-tech. All of these tools can be helpful at different times during the progression of a patient's condition.

Francine, a patient with ALS, was admitted to Hebrew Rehabilitation Center to recover after a fall. At first, Francine communicated with gestures for basic needs, and relied on an iPad to spell out more complex thoughts and feelings. However, as Francine’s upper body weakened, she lost control of her fingers and was no longer able to type out words. Francine’s inability to communicate left her and her family frustrated, depressed, and unable to move forward with goals for her care.

This prompted Hebrew SeniorLife’s Speech and Language Pathologist (SLP) to step in and transition Francine to new, more low-tech techniques. After assessing Francine’s abilities and greatest needs, the SLP realized that Francine mostly needed to communicate basic needs, like being hungry or wanting to use the bathroom. She also needed to be able to get the nurse’s attention when no one was in the room with her. To do this, Francine was outfitted with a communication book which enabled her to communicate by pointing to preselected pictures, words and photos that represented her thoughts and preferences. She was also given an easy-to-ring bell, which would alert the nursing staff that she was in need of assistance.

No matter the circumstances, losing access to one’s voice creates significant challenges and can be very emotional for everyone involved. However, with the help of AAC devices and a licensed Speech and Language Pathologist, a proactive communication plan can be laid out, lessening the burden on patients and families.

According to Hebrew SeniorLife’s Speech – Language Pathologist Irene Gofman, advanced planning is the biggest factor for a successful communication plan. Said Irene, “If we can begin planning before faculties begin to fade, we can make sure that the patient, their family, and the entire care team are trained on each AAC device that we plan to use down the line. We can also make sure that the patient’s goals for care are known ahead of time. As their ability to communicate becomes more labored, there will be no guessing on the part of the caregivers. Everyone will already know what the patient wishes. Instead of trying to decipher tricky messages, the care team can focus solely on moving forward with the patient’s predetermined goals. This prevents a huge amount of stress for everyone.”