Narrative Inquiry in Bioethics

The patient who sat across from me knew too much about all brain tumors. According to her, she would never know enough about the one sitting uncomfortably close to her brain's temporal lobe. In her quest for the 'right' answer to her meningioma problem, she became certain that its surgical removal would upend her life, leaving her in neurological taters.

She was a small business owner of a practice dedicated to medical massage. Indubitably, she had helped countless clients heal themselves of medical mishaps and avoid or recover from the tyranny of [End Page E13] a medical community that did not always provide respectable, hospitable care. She was certain a craniotomy would end her business, nullifying everything she had spent her life building. She became fluent in the legalese needed to transfer or sell her business in anticipation of surgery. To stave off losing her life's work from a surgical mishap, she sought opinions from a dozen neurosurgeons. They reassured her that a routine surgery like this would be effective with little chance of neurological collateral damage. She did not believe them. In her business she had treated numerous exhausted professionals. Many surgeons with whom she worked professionally frequently referred patients to her. She had seen the poor self-care that many surgeons and doctors brought on themselves in the form of unrelenting stress, drinking, bad eating habits, and even drugs. This made her nervous and untrusting about the care she could receive at the hands of an overworked or impaired surgeon. She scheduled appointments with every neurosurgeon she could find and interviewed them relentlessly, looking for the slightest sign of incompetence, unprofessionalism, antipathy, or lapse in compassion. Given her insistence and dogged nature, she usually found what she was looking for. She would bring her research to the appointments and interview the neurosurgeons on what other doctors had opined. If they were incredulous of research she brought or a technique on which she inquired, they were summarily dismissed.

At first glance, which is likely all that she got from many of her visits, these encounters put a spotlight on a 'difficult' patient refusing care. The deeper look that my patient deserved revealed a personal narrative of the oldest child who survived a broken home riddled with drug use and prostitution. She learned to rely on only herself for protection. She took unapologetic control of her fate. Her own mother had at one time offered my patient work as a prostitute. Her father was no better in providing protection and a decent upbringing. He had left her as an eight-year-old with the neglectful mother and four younger siblings to fend for herself, which she did against the odds. She suffered physical, emotional, and spiritual abuse.

As an adult, her strong sense of selfhood and boundaries allowed her to have a guarded relationship with both of her parents at a comfortable emotional distance. Her mission and passionate drive to help others heal saved her life. In healing others, she was healing herself. Importantly, her experience marked for her indelibly that while she could do this for herself, others were not reliable and could not heal her. She had only ever trusted and relied upon herself. She was the only one who had never let her down. She was terrified that this might be the first time. The potential surgery risked her cognition, physical capacities, and ability to care for herself. The risk was too great.

We met numerous times, uncovering her past, reliving the stories of her tumultuous background, and examining how she established her place in the world away from the horrors of her insecure childhood. She took in my reaction to her stories and saw the horror on my face when I tried to imagine a world where one's parents were not only neglectful but the source of danger. Through my reaction, she may have begun to have some compassion for her own story and put the pieces together. One several occasions, she became enraged when I didn't meet her expectations, or I didn't entertain the diatribe of neurosurgical scholarly work.

On one of those...