When I arrived in the ICU hospital room, I found Lili, my
best friend of 33 years, with a vent tube in place that
precluded her from speaking.
This did not mean she wasn’t able to communicate.
Lili lost her battle with cancer in September 2010, but steadfast
in her life as a teacher and camp director, she continued to
teach us until the end.
With eyes wide open, giving a thumbs-up, she signaled her
determination. With her finger pointing to the tube in her throat,
she clearly stated she had important things to say to her husband
and children, to me and to the teachers at her school.
“When are they removing the tube?” she wrote, using the
paint program on my iPad. “I have a meeting at the school at
As doctors and nurses began the “merry-go-round” of coming
in and out of her room, the questions began.
“How is she feeling today? Does she need more medicine?”
And thus we answered over and over, “I don’t know. You will
have to ask her.”
As evaluations continued, one remained lacking: what type of
communication system would be used to ensure Lili continued
to have a “voice” in her own care. As a PT who has worked
with persons with disabilities for 19 years, it was difficult for me
to accept the lack of awareness and assumptions being made
about her ability to think and communicate.
Can You Hear Me Now?
Everyone wants to be heard; it’s human nature. Regardless of the
patient’s diagnosis or the type of professional treating that client
— PT, OT, speech or RTS/ATP — direct communication with the
patient is the most powerful tool in assessing and addressing a
patient’s needs. Anyone working with the patient should address
the individual as if they could communicate, whether it be to
encourage facial expressions, mouthing words, eye blinks,
thumbs-up/down or a more sophisticated communication method.
But I have had patients come to my clinic for a wheelchair
evaluation with a communication mount on the wheelchair
frame… and no sign of the device. The common response from
the family: “We didn’t know we needed to bring that for the
Without that device, it was extremely difficult to hear from
that patient regarding what their goals were and their feedback
on the equipment being trialed.
With some patients, by virtue of their diagnoses, we do not
know the cognitive status or their communication ability. But we
still owe it to the patient to remove the ladder of inference and
Giving a Crucial Voice to
By Lois Brown, Invacare Corp.
assumptions, and give everyone
the benefit of the doubt. That
means making direct eye
contact, asking them about their
care, and adopting the belief
“Able until proven unable.”
Many healthcare professionals
I work with, especially in
the home, will tell you that most
times there is no established,
method among family and team
members. At a minimum, we
can begin by asking what the
system is for this individual. In a
hospital setting, the care team can post a sign above the hospital
bed that indicates that method. Simple, yet impactful!
A Matter of Interpretation
There are times when the family can best interpret what the
patient is trying to say, and therefore the strategy is to wait for
that interpretation so the patient is included in the process.
Utilizing closed-end questions (yes/no) versus open-ended
ones during the patient evaluation can yield important information.
Remember, communication strategies can range from a
magnetic MagnaDoodle drawing board to a paint or communications
device application on an iPad or iPhone, to a simple yes/no, thumbs-up/down or a letterboard with a headlamp.
Another aspect of communication is establishing a method to
ensure learning and carry-over. For those prescribing and fitting
wheelchairs, it is important to document the patient’s ability
to safely and successfully operate the mobility device being
prescribed. With a communication issue, it will be important to
determine how the person is best able to learn.
For instance, do they learn better by listening, watching,
writing or a combination of methods? Asking them to perform
specific mobility tests and observing outcomes may be the only
way to determine their skills and satisfaction with the device.
Another important recommendation is to refer the patient to a
speech therapist, who can determine the best long-term communication
It took Lili’s husband and me to ensure she had a voice: an
iPad, a MagnaDoodle, and later, a pen and paper that ultimately
allowed her to be an active participant in her care. Please do
your part to ensure everyone’s voice can be heard.