Monday, November 28, 2011

End of Life Communication Strategies for People with ALS

From Journal of the 21st International Symposium on ALS/MND
December 2010
Special thanks to my co-writer, Lisa Bruening, MS, CCC, SLP



1 ALS Association, National Offi ce, Calabasas Hills, CA, United
States, 2 ALS Center, University of Pennsylvania Health System,
Philadelphia, PA, United States, 3 ALS Association, Northern
Ohio Chapter, Cleveland, OH, United States
E-mail address for correspondence: abrownlee@alsa-national.
Keywords: communication, end of life, AAC

Background: Many people with ALS are not able to verbally
communicate at end of life and rely on many different forms
of communication systems to address medical and social
needs, ask questions, and convey fears and concerns about
the dying process. Many allied healthcare professionals have
expectations that patients will utilize an electronic communication
device until death. The results of this three year survey
fi nd that people with ALS are not using electronic communication
systems at end of life but in fact are using multiple
modalities of communication, the primary system being
low technology like eye blinks, gestures, and letter boards.
The speaker will present the results of this survey and
recommendations to the fi eld to address the communication
issues of people with ALS at end of life.

Objectives: 1) Determine how many ALS families were
aware of speech/communication issues related to ALS; 2) List
specifi c communication related topics people with ALS are
communicating at end of life; 3) Identify what communication
strategies people with ALS are using at end of life; 4) Identify
the number of people that were enrolled in hospice.

Methods: Surveys were sent to caregivers of ALS patients in
various US States for a three year period from 2007-2010.
Caregivers we asked specifi c questions as to how their loved
one was communicating 3 months prior to death, 1 month
prior to death, and the last few weeks and days of life. Surveys
were sent via regular US mail.

Results: Almost 75% of those surveyed had signed on to hospice
services; most people with ALS were communicating via
speaking 2-6 months prior to death and 4 weeks prior to death.
Days before death, most people with ALS were using gestures,
eye blinks, letterboards, and electronic communication devices.
In the last 2-6 months, less than 20% of people that had electronic
devices used them. In the initial survey, sent to caregivers
from 2007-2009, there were a total of 93 caregivers who
reported their loved one had an electronic device in the home.
48 caregivers reported that their loved one had a device and
chose not to use it – over 50%. Another 19 reported that their
loved one sometimes chose not to use it for a total of 72% that
had a device and chose not to use it. Most people with ALS
used their electronic devices for less than one month.

Conclusions: More stress needs to be placed on low technology
options and/or multi-modalities of communication systems.
Caregivers and allied healthcare professionals need to
be trained in various low technology options since it seems
families use multiple systems for communication when people
with ALS are near the end of life.

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