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

C14 COMMUNICATION STRATEGIES THAT ALS

PATIENTS USE AT END OF LIFE: RESULTS OF

A THREE YEAR SURVEY

BROWNLEE A 1,2 , BRUENING L 3

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.

org

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.