Narrative Inquiry in Bioethics

“Lost time is never found again.”

—Benjamin Franklin

In the fall of 2005, my 19–year–old daughter, Liat, was an ostensibly healthy college student in Connecticut. One Friday afternoon, Liat called to tell me she had not been feeling well, had gone to college health services and they had told her to go to the local hospital. After hearing that, I decided to drive to the hospital to meet her. When I arrived a few hours later, Liat’s skin had turned almost the color of a banana and she could not get out of bed. Despite their best efforts—they brought in a blood specialist, the head of GI and their Medical Director, the local hospital could not determine the cause of her condition. However, we were in frequent contact with a number of medical professionals back in New York, both family members and our own family doctors. Based on their advice, we knew that something was seriously wrong with Liat and we might want her to be treated at a more sophisticated medical center than the local hospital.

The next morning, Liat’s mother and I decided to have her transferred by ambulance to New York–Presbyterian Hospital in Manhattan. A short while after she arrived there, a GI resident examining her indicated that she might have Wilson’s Disease, a rare congenital condition which prevents the body from eliminating copper which as it accumulates [End Page 29] can damage the liver, kidneys and brain. The resident told us we were very fortunate since an expert on Wilson’s Disease, Dr. S, was in the hospital that day seeing other patients. Dr. S. confirmed the initial diagnosis, which was supported by the observation by an ophthalmologist of Kayser Fleischer rings in Liat’s eyes. Later that day, Dr. S. informed us that Liat’s liver had been damaged beyond repair by the Wilson’s Disease and that she would need a liver transplant. Dr. S subsequently took me aside, informing me that Liat’s condition was very dire and that I should consider the possibility of donating a part of my liver to Liat, since a cadaver liver might not be available in time. This was something I did not even know was possible. In about 24–hours I had gone from being the father of a seemingly healthy college student to one considering donating two-thirds of my liver to my daughter.

Liat was transferred to the Medical ICU at the Hospital’s facilities in upper Manhattan where the Center for Liver Disease and Transplantation (CLDT) is located. Over the next three days, I underwent an intense series of physical examinations, medical tests and counseling at CLDT regarding my qualification to be a donor. I later learned that to undergo this process in such a short time period, which usually takes several weeks, required a waiver from UNOS. Although the time period was compressed, I felt that the tests and counseling I received were very thorough. In more typical circumstances, I may have had one or two tests or consultations a day. Instead, my course of tests and consults was more like a nine to five job. Notwithstanding the full days, I was not worn out and felt as if I received more than sufficient information about the donation operation, the risks involved and the prospects that it would help my daughter. I had my own internist, had a counseling session with the CLDT’s psychologist and my own independent donor advocate, a nurse practitioner.

I was also fortunate in that through family and friends I was able to call on a number of physicians who provided me with even more information about Liat’s condition, the likely outcomes for her after a transplant operation, and how I would fare as a donor. The brother of one close family friend had formerly been a member of the kidney transplant team at Columbia Presbyterian and another relative is a liver transplant surgeon at UCLA medical center. All were reassuring in advising that we were at the right place by having the transplant and donation surgeries at CLDT. Indeed, it made me feel...