On learning humility: a thirty-year journey.

When I returned to Johns Hopkins as an associate professor in 1969, the physician's role was quite paternalistic. The concept of informed consent was just beginning to enter the patient-physician relationship, and the idea of shared decisionmaking had not begun. Parents had responsibility for the surrogate decisionmaking for their child, and the idea that disabled persons have the same rights as everyone else was still new. I had been hired to direct the pediatric neurology division at Johns Hopkins. I was also to run the March of Dimes Birth Defects Clinic which primarily cared for children with spina bifida, a congenital malformation of the spine associated with varying degrees of paralysis of the legs, bladder, and bowels, and often associated with hydrocephalus (water on the brain). During the mid-1960s, newborns affected with spina bifida were sent home or to an institution, typically to die. Children who did not die had treatment begun when they were a year old. As surgical and anesthetic techniques improved, however, surgery for the newborn with spina bifida became increasingly feasible, and John Lorber, of Sheffield, England, showed that early closure of the back to avoid meningitis increased the child's chances of survival. (1) When I began to work in the Birth Defects Clinic, early surgery was the norm but was not mandatory. As director of the clinic, it became my responsibility to elicit the parent's informed consent for the operation to repair the back. I needed to discuss the likelihood of the child's future ability to walk, with or without braces and crutches, and to explain the consequences and management of the probable incontinence of bowel and bladder and the likelihood of hydrocephalus and of mental retardation. I had been trained in the paternalistic era when the physician directed the patient's care and convinced the parents to make the correct decision, and this was typically the approach I put into practice myself. I have recently had occasion to look back on my work and to see what happened to some of the patients I have worked with over the years. What I find leads me to think differently about much of what I have done. I had been a biology major in college and had little patience for philosophy and ethics. I found them lacking the precision that had led me to science and eventually into medicine. Through my medical school and residency training there were no courses in medical ethics, caring and compassion, or communication. We were taught "medicine" and to make good decisions for the patients. But my journey with spina bifida has led me toward humility and, I hope, greater wisdom. About one year after I began directing the clinic, I saw a newborn with spina bifida whose story has become emblematic for me of my ever-growing uncertainty. The infant had a high spinal lesion, and I explained to her parents that she would spend most of her life in a wheelchair and never have normal control of her bowel or bladder. She was likely to develop hydrocephalus, and if we did not operate to close the back, she was likely to develop meningitis. They were a churchgoing family and asked to consult with their minister. The following day they returned and told me that, with their minister's guidance, they had decided to let God make the decision. They did not want to have a surgeon interfere with God's will. They wanted to take the baby, now named Faith, home and provide her with love and care. I knew that if she were taken home, she would probably die of meningitis. Was death with love preferable to life with love and suffering? At that time, society's attitudes toward the child with Down Syndrome were changing; the prevailing sentiment now was that if the child had an intestinal blockage she should be operated on, with or without parental permission, and then either taken home by the family, put up for adoption, or placed in foster care. I wondered whether Faiths case was similar, and I worried about my obligations both to her and to her family. …