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While media coverage of the Terri Schiavo case in Florida has recently refocused public attention on end of life decision making, another end of life tragedy in Utah has raised equally challenging-and possibly more fundamental-questions about the roles of physicians and families in matters of death. The patient at the centre of this case was Jesse Koochin, a six year old boy suffering from "inoperable and incurable" brain cancer. He had been undergoing care at Primary Children's Medical Center in Salt Lake City since September 15, 2004 when "his tumor pushed his brain stem down through the skull". 1 Subsequently, two physicians independently determined that the child was "brain dead" and informed his parents that they would order life support removed within twenty four hours. Steve and Gayle Koochin overtly rejected the hospital's definition of death. The couple, relying on traditional notions of cardiopulmonary death, obtained a restraining order to keep Jesse on a ventilator and ultimately removed the brain dead child from the hospital. The ongoing case raises the complex question of whether patients' families should be permitted to opt out of widely accepted definitions of death in favour of their own standards.
The definition of death has evolved rapidly in the United States over the past thirty five years. Until the middle of the twentieth century, the medical community, the legal system, and an overwhelming majority of the public understood death to be synonymous with a cessation of circulation and pulmonary respiration. These attitudes changed as new technologies enabled patients with minimal or no brain function to remain breathing on "life support". 2 Starting with the efforts of the Harvard Medical School's Ad Hoc Committee to Examine the Definition of Brain Death in 1968, a series of expert panels have sought to redefine death as the irreversible loss of function of the whole brain, including the stem. 3 Most notable among these was the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, which in 1981 issued a report embracing the whole brain death criterion. This report led to widespread adoption by the states of the Uniform Determination of Death Act-a joint creation of the American Medical Association and the American Bar Association that defines death...