Narrative Inquiry in Bioethics

The night of my nephew’s closed head injury in Boston, I was on call as a neurosurgeon at Tampa General Hospital. I was therefore not shocked at first when my telephone rang at four o’clock in the morning, but I soon understood the severity of the tragic news. The next half hour was a blur of frantic phone calls and devastating decisions leading to surgery to remove a subdural hematoma from my nephew’s head, even though he was only two brain stem reflexes away from brain death.

I thought that my experience as a neurosurgeon would somehow help me. However, when my sister–in–law asked me if this was just like the other tragic closed head injuries that I had seen in 26 years of practice, my answer was very simple: this was the only severe closed head injury I had ever seen—in my family. At this point, I was no longer a neurosurgeon. I was an uncle. My nephew’s closed head injury overwhelmed both his brain’s capacity to survive and my entire family’s ability to think rationally or objectively while grieving so intensely.

It is in this context that we were asked to consider organ donation. The appeal for organ donation is one of altruism. My nephew’s parents agreed that organ donation would be an important way to honor their son’s life, allow him to make one final contribution to save the lives of several patients, and help to bring peace to the family.

I will never forget, however, my niece’s distraught response. She is altruistic by nature, but was tremendously conflicted by the choice to donate her own brother’s organs. At this point, all discussions about organ donation stopped until we could understand the source of her conflict. Since she did not have legal authority regarding the final decision, some family members wondered if organ donation should be allowed if she could not come to terms with the choice. She felt isolated, because she was the only person in the room who was experiencing conflict. As a neurosurgeon, I have always advised other families in this situation that they may have more peace if they can make such decisions unanimously, regardless of who has the ultimate legal authority for decision–making. This helps bring healing to the family, eliminates disruption of family values and unity, and reduces possible feelings of guilt.

I asked my niece what she was feeling. She stated something that I had never heard before as a neurosurgeon. She had listened to the words that her brother was brain dead, but she felt that he was somehow still alive, since he was breathing on a ventilator and his heart was beating. She felt powerless due to her inability to do anything more for [End Page 9] him. She also wanted to be there when her brother “died,” which she would recognize by the cessation of his heartbeat. She would not abandon her brother.

I searched for a way to respect my niece’s wishes and her legitimate request, while preserving the ability to proceed with organ donation. Solving this conundrum proved to be a pivotal part of the beginning of both her mourning process and acceptance of his death.

As an uncle, I experienced the clear dissociation that modern medicine creates between medical care and the natural human process of recognizing and accepting death. My family observed the subtle difference between a deep coma and brain death. They noticed that my nephew’s color had changed when his temperature dropped to 94^o F before the heating blanket was placed. They perceived the decrease in muscle tone when he stopped breathing faster than the ventilator rate. Outside of that, there was no significant difference in his appearance when he was “alive” or “dead.”

In spite of heroic measures and superlative surgical and medical care, his closed head injury progressed unremittingly until he became brain dead 36 hours later. The diagnosis of “brain death” was pronounced to the family. Accepting the death of someone who is...