As a relieved and excited new genetic counseling student, I am spending my first semester absorbing every fact about what genetic counselors do and how they do it. Every detail is compelling, but patient empowerment has truly captivated me. I often find myself daydreaming about future patients that will leave my sessions, dazzled by my genetics expertise and psychosocial skills, feeling invigorated and ready to take their genetics-related healthcare into their own hands!
However, this rosy outlook was challenged when I was paired with a patient during their visit to a multidisciplinary clinic. The person I followed throughout their day was a spunky, clever, young adult with mild intellectual and physical disabilities. Most striking about this person was their staunch, clear assertion that they had no goals or desires in their life. Throughout the appointment, I watched various providers discuss this person’s lack of goals and react with barely disguised shock. After a pause, they would encourage this individual to do more with their life by stating how lucky they are to have a less severe manifestation of their condition or by suggesting goals for them.
Despite good intentions, I observed the patient’s rapport with providers sour into despondence with each subsequent “empowerment” message. By the time we both left the clinic, I was worried for this person’s future health and at a loss for how the experience could have been improved. As a goal-oriented person pursuing a decidedly goal-oriented career, I thought: Do some people not have goals? I wondered how a genetic counselor would have responded, and how do you empower someone who does not want to be empowered? To what degree does an inability to empower a patient fall back on us? If empowerment provides confidence in directing one’s life, why can’t staying where you are also be a direction?
After reflection and debriefing, I have some answers and more questions. My first realization is that no, not everyone is driven by well-formulated goals, and my program director wondered if anyone had probed into why the patient felt this way. (They did not.) At her suggestion of open-ended questioning – instead of suggesting goals – I feel reassured in having a next step to explore a reason, if present. Another thought, was that the immediate reaction was ableism, rearing its insidious head. Reflecting on the extreme value on productivity in our society, I wondered if using our positions as healthcare providers to place value on a decision to just be could be an opportunity to identify and deconstruct ableist practices.
This encounter has challenged my worldview, and I have resolved to ask myself: Am I empowering someone so that I feel more comfortable? Is this encouragement still patient-focused? This experience tempered my rose-colored glasses and reinforced the overwhelming value of reflection after patient care. By unthinkingly following the urge to meet all our outcome goals – including empowerment – we may run the risk of empowering society over our patients.