- Associated Press - Wednesday, March 23, 2016

TOPEKA, Kan. (AP) - In a story March 21 about pending legislation in Kansas dealing with end-of-life medical treatment for children, The Associated Press reported that Sheryl Crosier said that doctors had said they were not trying to expedite her terminally ill infant son’s death, and that heart medication was withheld from her son. Crosier says doctors did not say that, and that the medication was not withheld.

The AP also reported that the comfort food her son was fed had no nutrients, which is incorrect.

The AP also erroneously reported that Kathy Ostrowski, legislative director of Kansas for Life, said notifying legislators and lobbyists of a hearing three days beforehand is common practice. Ostrowski did not describe the three-day period as common practice.

A corrected version of the story is below:

Kansas lawmakers debate end-of-life treatment for children



Kansas senators have given first-round approval to a proposal aimed at giving parents of vulnerable children a say in end-of-life treatment

By MELISSA HELLMANN

Associated Press

TOPEKA, Kan. (AP) - Sheryl Crosier considered the birth of her son Simon a miracle. Shortly after his delivery in 2010, Simon was diagnosed with a rare chromosomal disorder called Trisomy 18, in which only 50 percent of babies carried to full term are born alive.

But three months later, Simon died at a St. Louis hospital. Crosier told The Associated Press on Monday about steps the hospital took without her approval that she believes contributed to his death, and Kansas senators gave initial approval to a bill aimed at helping parents in similar situations.

At issue in the bill, called Simon’s Law, are medical futility policies, guidelines that institutions create to determine when attempts to prolong a patient’s life have become ineffective.

Crosier’s son had heart complications that required surgery, but first he needed to grow larger and take medication. He died only a few days before he was scheduled to have a consultation for the surgery. She said she later looked through her son’s medical records and discovered he was given only comfort feedings and that he had a “do not resuscitate” order without her knowledge.

Simon’s Law would require hospitals to obtain written parental or guardian consent for children before issuing a do-not-resuscitate order or depriving children of food or medicine needed to survive. Health facilities, nursing homes and physicians also must offer patients a written disclosure of any policies that are either life-sustaining or non-beneficial to their situation upon request, under the proposal.

A provision in the bill would waive the requirement for written consent when a physician determines that withholding food, medication or resuscitation would not hasten death. Feuding parents or guardians could also resolve any disputes about treatment through a district court.

Crosier, of St. Louis, contends she should have been part of the discussion to determine the end-of-life treatment for her son. She said Simon could still be alive today if the doctors hadn’t determined that he was “incompatible with life” shortly after he was born.

“What is really important here is the parental rights,” Crosier said. “You don’t even realize that you have these parental rights until they’re violated or taken away.”

Legislators in Missouri are also considering Simon’s Law, which had a hearing in a Missouri House committee last month. But the committee has not yet voted on the measure.

The nonprofit Kansans for Life introduced the proposal to Sen. Jacob LaTurner, a Republican of Pittsburg, who said it was “very necessary to make sure that this doesn’t happen to any other children,” during a Senate debate Monday. He referenced a handful of similar incidents around the country, including in North Carolina.

Kansas senators were in general agreement that the measure had worthy intentions, but they disagreed about the process of implementing it. Democratic Sen. Laura Kelley, of Topeka, said no opponents or neutral conferees attended the hearing because it was scheduled the day after the measure appeared on the calendar.

“I’m afraid that this bill was put together without any input from other stakeholders,” Kelley said, adding that doctors or hospitals did not have an opportunity to weigh in on the matter.

Kathy Ostrowski, the legislative director of Kansas for Life, said senators and lobbyists were notified of the hearing three days beforehand.

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