We first heard about this case from nurses in one of our intensive care units while we were conducting an inservice. When the session was over, we discussed it between ourselves, and decided that it must have been misrepresented. The case had been presented as one of a teenager who was brain dead, had been so for six months, yet had been brought into the ICU for treatment. We have run into this before, we thought: medical professionals confusing brain death (...) with persistent vegetative state. But, of course, we reasoned, no one can be brain dead for six months. To us, as it would to many, the case sounded like a clinical and ethical impossibility.A week later, we were called by an attending physician from another ICU, at the urging of that unit's nursing staff. They had a patient who was brain dead, whose presence was causing distress among the staff. Ronald Chamberlain, a fifteen-year-old boy, had been a patient at a nearby longterm rehabilitation facility that is equipped to care for ventilator-dependent patients. (shrink)

This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the (...) practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives. (shrink)