Suddenly "I" was a "them".

Suddenly, I was a “them.” The moment that should have been the most joyous in my life became the most tragic. In the shift from health care professional to mother of a critically ill newborn, I learned things that redefined both my life and my professional identity. Never before had the “us vs them” divide been so clear. I had worked in the “us” role for years and was comfortable and confident in my ability to understand “them.” I knew that health care professionals were supposed to be powerful, authoritative, and knowledgeable. Families, I knew, were supposed to be vulnerable, dependent, and fragile. I thought that I was able to bridge that divide pretty well. With the birth of my child, Amanda, I became a “them.” In that moment, I was thrust into the role of the NICU mother. I had long sympathized with and supported such mothers. I could now truly empathize with those parents whom I had witnessed standing helplessly next to the small bassinets in the most technological of settings, crying many tears and uttering daily prayers of healing and thankfulness for modern medicine. When it was my own baby, I tried to draw on all that I had learned and taught in my role as a bioethicist. My experience provided little solace. My knowledge base failed me. From this experience, I have come to understand the world of the patient and the limits of empathy. I continue to struggle with three questions that my daughter’s illness occasioned all too personally: the nature of the questions physicians pose to our patients/families; the reliability of the informed consent process; and the just allocation of health care resources. As health professionals, we pose questions to parents that now seem incomprehensibly unfair. As I was struggling to deal with the incredible stresses and uncertainties of my baby’s critical illness, I could not also deal with decisions about whether to let her die. Questions about life and death are hard, and are supposed to be hard, but now those questions seemed impossible. I was fortunate not to address questions about forgoing life-sustaining treatment, not to face death directly. My daughter’s heart defect could be surgically repaired. The surgery went well and her long-term prognosis was excellent. However, I was haunted by the “what ifs,” questions perhaps yet to come. What if they discovered other problems during surgery? What if the surgery didn’t go well? What if she experienced postsurgical complications? What if there are related problems later in her life? I dreaded the questions and could not begin to fathom the answers. What if I had to make the decision to let Amanda go? My concerns about the questions I feared also raised questions about the informed consent process. How much did I need to know? Given my distraught state, could I actually make any decisions? Was I really being asked to make decisions, when the medical recommendation seemed so clear? What if I had refused treatment deemed medically necessary? The legal standard for disclosure of information in the informed consent process requires revealing all that a “reasonable person” would need to know to make an informed decision. In my stressed, exhausted, tearful, postpartum state, I do not know that I could have claimed to be a reasonable person. I teach my medical students that a subjective standard, in which physician disclosure is guided by the particular patient/family, may be ethically preferable. I continue to believe that is the best standard, but in the days after Amanda’s diagnosis, I could not have guided the disclosure process. I needed my daughter’s cardiologist and