A bill proposed in the Missouri House would prohibit health care facilities and others from withholding life-sustaining procedures from a minor patient without the written consent of a parent or legal guardian.
Sponsored by Rep. Bill Kidd, R-Kansas City, HB 113 also would require health care facilities, nursing homes and physicians to disclose in writing any policies that relate to a patient's care, including life-sustaining or non-beneficial treatments.
The bill is nicknamed "Simon's Law" after Simon Crosier, who was born in 2010 with Trisomy 18, a genetic disorder that includes an extra chromosome 18. Simon lived three months.
His mother, Sheryl Crosier, a member of Annunciation Parish in Webster Groves, wrote a book in 2012, called "I am Not a Syndrome -- My Name is Simon." In the early stages of her research, Crosier was going through Simon's medical records and discovered that doctors had placed a "do not resuscitate" order in her son's records without her knowledge, she said. He also was ordered to receive nutrition as a comfort measure only. Turns out, the hospital had in place a futility policy, which allows physicians to withdraw medical treatments deemed to be "futile."
"They took the road they wanted to go," said Sheryl Crosier. "They started taking away, stripping him of everything. They would say, things like 'not for Simon,' or 'incompatible with life.' It was very dehumanizing."
In 2013, the Crosiers met with a film producer who was working on a documentary on families with children who have special needs. The Crosiers discovered they were not alone. Several others families shared stories of not being informed whether the hospital had a futility policy and what rights they had as parents in making decisions for their children.
Last fall, Crosier shared her story at a Missouri Right to Life event in Kansas City. There, she met Kidd, who was moved by her story.
"This should not even occur," said Kidd. "Removing life-sustaining treatment (without permission) is punishable by law, but it's being done and off the books, from my understanding. Morally and ethically they should inform the parents and that's not always happening. This is about parental rights. If treatment is going to be withheld, then the parents have to have it in writing."