Ten Years Later: No Longer A Student, But Still Learning

Field: Health Professions (Health Sciences)

Ten years ago, I was a student, standing on the brink of my genetic counseling career. During my first year of training as a genetic counselor, I had already had several experiences that impacted me from both a personal and professional standpoint. I was privileged enough to be able to share two such experiences in a submission to the “Defining Moments” series of essays published in the Journal of Genetic Counseling (Drake 2002). However, as any genetic counselor knows, graduation from a genetic counseling program does not mark the end of those opportunities to learn and grow. In the 10 years since writing that first essay, there have been many more defining moments. In the first essay, I recalled the first time I explained a genetic concept without prior preparation as well as the first time a patient cried during a session with me. These two incidents helped me become comfortable with my knowledge and ability to provide psychosocial support. In this essay, I will describe two experiences that helped me become comfortable with the limitations of my knowledge as well as my own need for support. Several years ago, I met with a woman whose infant daughter had passed away following a sudden and rapid course of neurological decline. She was told at the time that her daughter's course “seemed mitochondrial”, but no testing or work-up was completed. The mother had been referred to our department for recurrence risk counseling. Prior to the appointment, my colleagues and I pored over all the available medical records, hoping to find some clues. However, the record review did not shed any light on the situation, and there were no samples available to aid in our efforts to determine the cause of her daughter's death. Unfortunately, the only thing we were able to determine with certainty was that we could not determine anything. The day of the appointment arrived, and as I reviewed the limited available information with the mother, I could sense the frustration she was feeling. She had come to this appointment looking for answers. It had been a year since her daughter had died, and she had been hoping that, at the very least, she would learn whether this was something that was likely to happen again. Finally, she interrupted me with a very simple question: “What killed my daughter?”. Again, I started to discuss what we knew versus what we didn't know as well as the wide range of recurrence risks. However, as I talked, I saw her eyes glaze over. It was clear that she was no longer interested in what I was saying. And, quite frankly, I couldn't blame her. I wasn't offering any useful or actionable information. So, about 3 min into my monologue, I stopped quoting facts and figures and just said, “I don't know why your daughter died.” After this simple statement, we spent the rest of the session focusing on her feelings of frustration with the medical community, the grief over the loss of her daughter, and her fears for the future. While we couldn't provide her with any definite answers to her many questions, I would like to think that she found our discussion helpful in some way. After the appointment, I reflected on our discussion and how those three words, “I don't know,” changed the course and tone of the entire session. I wish I had been able to provide her with some useful information, some answers. However, I was also reminded of the limitations of our knowledge and skills. In many cases, we just don't have the answers. However, this does not mean that we cannot provide a much needed service to our patients: an opportunity to share their thoughts and feelings with an empathetic listener. The second defining moment that I would like to discuss occurred early in my genetic counseling career. I met with a patient to discuss presymptomatic Huntington disease testing. After going through the testing protocol, including a meeting with a psychologist, he decided to proceed with testing. The result was positive. The results session, while challenging, went about as well as could be expected. We reviewed his support systems, discussed coping mechanisms, and arranged for an appointment with the nearest multidisciplinary Huntington disease clinic. However, several months after the results session, I heard that, sadly, the patient had committed suicide. I immediately began to replay all of our sessions in my head. What had led him to the decision to end his life, especially since he was still asymptomatic? I thought about the man's children, and I couldn't help thinking how they had been cheated out of several good years with their father. I wondered about the man's close friend, who had accompanied him to his genetic counseling appointments. How was he coping? I wondered whether there was anything I could have said or done differently. Should I have made more follow-up phone calls? Were there warning signs I should have seen? The feelings of guilt and self-doubt were nearly overwhelming, and I wondered whether I was cut out to be a genetic counselor after all. Luckily, I attended the annual NSGC Short Course, where one of the sessions focused on counseling dilemmas and challenges. We had the opportunity to break into small groups to discuss our own challenging experiences. I found myself in the midst of an impromptu counseling session with people who could completely understand what I was feeling. I am pretty sure that I took up the entire time allotted for the small group activity as I described the situation and my reactions to it. The level of support and empathy I received was amazing, and, for the first time, I realized it is not only acceptable, but often necessary, to lean on my colleagues and peers for support. To this day, I remain thankful to those genetic counselors in my small group who provided such compassionate support and encouragement during that breakout session. Although the situation was very challenging, I am thankful that it helped me realize something I should have already known: the genetic counseling community is such a wonderful and supportive resource. Since then, when confronted with a particularly challenging or emotional case, I always seek support from my peers to help process the situation and my reactions to it. Ten years ago, as a genetic counseling student, I learned to be confident in my knowledge and my ability to support families in distress. Now, as a seasoned genetic counselor, I have learned to be comfortable with the limitations of my knowledge as well as my own need for support from my colleagues and peers. I am looking forward to whatever lessons the next ten years may bring!