Narrative Inquiry in Bioethics

I was called to a meeting in an older area of our facility—a smallish conference room with tables and chairs seemingly drug in from any number of other rooms in the area. Over the previous week a patient had arrived having suffered a traumatic brain injury from an automobile accident. His many family members had been on–hand in the ICU where his body now laid after having been declared dead by neurological criteria the day before this meeting. The meeting had been called in some haste at the request of both the hospital administration and the state’s organ procurement agency (OPA).

As people filed in, I asked the hospital’s risk manager, who had requested I come, what the point of the meeting was. She informed me that during conversations with the patient’s family, both mother and sister had insisted that the hospital not procure his organs. However, the OPA believed that they should be donated because the patient had a notation on his driver’s license indicating he wanted them to be donated. The hospital felt conflicted, and thus a meeting was arranged to determine which way to go.

For decades tradition has it that during conversations about donating organs, a physician or procurement officer would ask permission to procure organs from the patient’s family, even when living wills and driver’s licenses seemed to give the patient’s own written permission. Even in a medical culture that had long learned to accept the principle of respect for autonomy, such a request made to the family seemed requisite. After all when [End Page 23] someone dies, families take “possession” of the body, the disposition of which typically falls under the authority of the family.

In 2006 a revision to the Uniform Anatomical Gift Act was presented across the country in hopes that all 50 states would adopt it (or something much like it). Specifically, one provision in the Act made more concrete a belief that many in the procurement community has long held—namely, families should not be able to override the stated interests of patients to donate their organs. Such a provision seems perfectly in–line with contemporary medical ethics, in which respecting patient autonomy matters. But there remain important practical issues in the procurement process that can cause ethical concern.

It is well known that the most common form of stated permission to procure organs is a notation on a driver’s license. Since most adults carry them, using the license allows providers to identify a potential donor easily, and in this day–and–age of electronic state recordkeeping, a donor registry can be quickly populated using data from the department of motor vehicles in each state. At the same time, while license–recorded wishes help increase the pool of donors, the process of securing those wishes is problematic.

The organ procurement system in the United States is a donor–based, or opt–in, system (whether that is the best system is a hotly debated topic, but it is what we have now). That is, it relies on acts of charity, not obligation. As such, there remains a moral obligation to respect the would–be donor’s autonomous decision making, and in order for a decision to be fully autonomous, the decision–maker must be fully informed about the decision being made—its outcomes, burdens, benefits, and alternative. The requirement, then, is that the procurement process occur in such a way that we can assure that persons only agree to be donors after being properly informed about what they are agreeing to—what donation entails, both outcomes and implications.

By the time all had gathered, the room was so full that I found myself sitting on top of a table up against a wall outside the main circle of discussants. Among others within that main circle sat a vice president of the hospital and the president of the OPA, risk managers for both the hospital and faculty group practice and the patient advocate, a transplant surgeon and a bedside nurse.

Once the conversation began, clear lines became drawn. In one camp was the OPA. The state had...