2006 Student Ethics Essay Award - 2nd Place
ASHA's Principle of Ethics I In Action
by Laura Guengerich
Northwestern University
Evanston, Illinois
NSSLHA Chapter Advisor: Tracy Cafferty
In my undergraduate studies, I took several philosophy
classes, where we held long discussions about personal ethics and
morality. However, I never studied medical or professional
ethics until I came to graduate school for Speech Language
Pathology. In Healthcare Delivery Systems, I learned that
standard medical ethics are not debatable, and should be adopted
when one enters a medical profession. We studied ASHA's Code
of Ethics thoroughly. The Code of Ethics seemed abstract to me at
the time, because I was not yet seeing my own patients, due to
the structure of our program. A partner and I gave a five-minute
summary of Principle I, but I was hard pressed to visualize
realistic clinical examples of points A-O as I summarized
Principle I for the class. I had a chance to see ASHA's
professional ethics code in action during my first off-campus
placement, over a year later.
I was at a fascinating hospital in a low-income part of the
city, seeing inpatients and outpatients. Our caseload included
children with rare, often unpublished syndromes: a physically
healthy boy with language symptomatic of a Wernicke's
aphasic; a girl who ate paper and was being treated for language
delay; a severely autistic 5-year old triplet, for whom progress
was hitting a one-button talker twice during an hour session. I
come from a family of three children, and I've always hoped
my parents didn't each have a favorite child. But I had a
favorite child among these, the first outpatient I saw on my
first day at the hospital. I'll call her Joy.
Having read Joy's file before I met her, I knew she was a
ten-year old with repaired craniofacial anomalies and
developmental delay, being treated for severe expressive language
delay. I was shocked and sad when I first saw her. Joy had been
born with such an uncommon combination of clefts that her
condition was described by Tessier's classification system,
which describes the location of the cleft (or in Joy's case,
multiple clefts) running obliquely and laterally through her
face. Joy had undergone multiple surgeries, but her face looked
so anomalous that I doubted her final surgeries would give her
the relatively normal appearance that a simple unilateral cleft
lip repair affords. The shock left my face within two seconds,
since she was standing right beside me, grinning because she
loves to meet new people. I couldn't help but smile back. Joy
took my hand and led me to the treatment room, so she could share
a list of items she wanted to tell me about herself. "Number
1: I go to school. Number 2: I have a little
brother." I felt hot tears in my eyes when she read,
"Number 4: I love myself very, very much."
A requirement for off-campus hospital placements was that each
student would present a case to peers. When I decided to present
Joy's case, my supervisor suggested that my peers might
benefit from seeing a video of therapy with Joy, so that they
could observe her sunny attitude, as well as visualize repair of
an unusual cleft. Since I am a visual learner, I agreed that a
video would complement my "grand rounds"-style
presentation. During a meeting with Joy's mother, a
beautiful, soft-spoken woman, I described the purpose of my
presentation and asked for her permission to videotape her
daughter. She smiled and laughed before replying, so I was
surprised when I heard her respond, "No." I
realized that the laughter had been due to her nervousness, to
her gathering her courage to tell me she was uncomfortable with
this. The Code of Ethics flashed through my mind, and I told her
I completely understood. She told me that she gave her consent
for me to present Joy's case, but that she "wasn't
ready" to share her daughter's face with the medical
world. Because she was usually reticent during our interactions,
I was surprised when she continued talking. She told me that
Joy's eye surgeon had approached her the previous year about
including a medical history and photographs of Joy in a textbook
he was writing. She had not given him her consent either. She
shared that she had recently begun to reconsider her response to
him, since the presentation of her Joy's medical history and
treatment might eventually benefit other patients. Joy's
mother was direct and honest, and I respected her for this.
When I gave my presentation, I did my best to verbally
describe Joy's physical anomalies and friendly, cheerful
disposition. I shared the fact that Joy's mother had not
given her consent, and that this was entirely her right within
our Code of Ethics. "Individuals should use persons in
research or as subjects of teaching demonstrations only with
their informed consent," says Principle I, part N. We should
not try to guess what our patients are thinking. Since by
profession we are communication experts, we should be as direct
as possible, and hope we receive direct answers. We should
ultimately have our patients' welfare at heart, not our own.
Although my presentation would have been supported by a video of
my work with Joy, the rejection of my request allowed me to see
the strength of a young single mother formulating her own ethics
as her life evolved to accommodate Joy's best interests.
ASHA Announces 2007 Student Ethics Essay Award (SEEA)
Competition
See the 2007 essay topic and submission information.