Jesse was diagnosed with an "inoperable and incurable" brain tumor in 2004. 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." 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. However, the parents rejected the hospital’s definition of death. Instead, relying on traditional notions of cardiopulmonary death, they obtained a restraining order to keep Jesse on a ventilator. Later, they removed the brain-dead child from the hospital. Jesse's heart ultimately stopped beating on November 19, 2004.
The landmark case was the first documented instance in the United States in which parents attempted to opt out of legally accepted standards of death.
- Appel, Jacob M. (2005). "Defining Death: When Physicians and Families Differ". Journal of Medical Ethics 31 (11): 641–2; discussion 642–4. doi:10.1136/jme.2005.011718. PMC 1734056. PMID 16269560.
- Collins, Lois M.; Thomson, Linda (2004-11-19). "Jesse loses his battle with brain tumor". Deseret News.
- Belluck, Pam (2005-03-27). "Even as Doctors Say Enough, Families Fight to Prolong Life". The New York Times.