Methods of Communication at End of Life for the Person With Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that results in loss of most motor functions by the time of death. Most persons with ALS experience a dysarthria that eventually renders oral/vocal communication unintelligible. This article reviews the communication needs of persons with ALS and the range of communication strategies used, including most forms of augmentative and alternative communication (AAC). Survey data are presented concerning perceived presence and severity of communication deficits, common communication topics, and communication strategies used with different communication partners and at 3 time intervals (2-6 months, 4 weeks, and 1-2 days) before death. Survey data were collected from 625 family members/caregivers in 8 states in the United States, reporting on their experiences with persons with ALS who were deceased at the time of the survey. The analysis focused on patterns of communication used in the last 6 months as end-of-life approaches. Most common communication topics were physical needs, caregiving issues, and family issues. Least common topics were spiritual and death and dying issues. Communication strategies did change as end of life approached, with a decrease in all modes of communication including natural speech, writing, gestures, and electronic AAC. Unaided and low-tech strategies did not increase during the same time interval. Health care providers must be knowledgeable about the communication options available and factors influencing communication choices. Speech-language pathologists play an important role in monitoring speech changes, providing assistance in making choices about communication options, and educating clients, health care providers, and family members.