Living on, with Heartbreak

This is an incredibly touching part of a great series by the Baltimore Sun on the effect of the death of a child. The series is inspired by an Institute of Medicine report on the failure of the U.S. healthcare system to respond to issues in terminal illness and death of children more generally:

Too many sick children endure aggressive procedures and treatments. Too many won't get the pain medicine they need. Many go months and years, cycling in and out of hospitals, without emotional and other support, concluded the Institute of Medicine in its report "When Children Die." In calling for more research and better training, the institute urged organized medicine and others to look at what has been a hidden issue.

"It is a painful thing to sit and dwell upon, that there is undue suffering happening to and with our babies and children," said Lizabeth Sumner, a member of the IOM committee who pioneered hospice programs for children in San Diego. "There will always be kids who die of something. As a society, how are we going to choose to respond to that situation?"

CORRECTED Parents Fight to Keep Dead Son on Life Support

KSL, the NBC affiliate from Salt Lake City reports yesterday on a confrontation in a children's hospital between parents and doctors over whether or not a 6 yr old boy is dead. The parents maintain that he is alive and that there is hope for him to continue on a trajectory that KSL describes as "filled with miracles." The photos in the story are remarkable. Doctors declared "very" pronouced death meaning that there is internal decomposition; an injunction has been filed to stop action by the physicians. The story has not been mentioned in any of the listservs. CORRECTION - Armand Antommaria of Utah corrected us on our assumption that KSL is in St. Louis. Oops.