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 Our caseload included children with rare, often unpublished syndromes: a physically healthy boy with language symptomatic of a Wernicke's aphasic; a girl who ate paper and was being treated for language delay; a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.