Mother fights for 'Simon's Law'

TOPEKA - Sheryl Crosier’s infant son died at 10:45 a.m.Dec. 3, 2010, a moment marking the beginning of her life as an advocate for laws preventing doctors from imposing do-not-resuscitate orders on children without consent of the parent.

On behalf of Simon and families that could endure similar heartbreak, Crosier made a case Thursday to the Senate Federal and State Affairs Committee for passage of a bill compelling Kansas medical facilities to disclose policies related to end-of-life care and prohibit implementation of DNR orders without parental permission.

Senate Bill 85 was opposed by the Kansas Hospital Association and other medical providers. Support for the measure - a similar bill passed the Senate last session - came from Lt. Gov. Jeff Colyer, the Disability Rights Center of Kansas, Kansans for Life and the Kansas Catholic Conference.

Diagnosed after birth

Crosier, of St. Louis, said Simon was diagnosed three days after birth with Trisomy 18, a rare chromosomal syndrome also known as Edward’s syndrome.

“We wanted Simon to have every opportunity to thrive and survive,” Crosier said. “However, some medical professionals thought differently. When Simon’s oxygen saturation levels began to fall, we were told this is the end. Nothing could be done. Simon drew his last breaths. I asked again what could be done and was told ‘nothing.’ ”

She said a hospital physician had attached a DNR order to Simon’s chart without consent. She belatedly discovered the hospital had a “futility” policy that allowed physicians to withdraw treatment deemed futile. For example, the boy was given “comfort” food intended not to nourish.

Simon’s law

After his death, Crosier began to promote Simon’s Law, which would make so-called futility policies transparent and require consent for DNRs regarding minor children with life-threatening conditions.

“It’s a protection of parental rights and protects a child’s human rights,” she said.

Deborah Stern, senior vice president of clinical services and general counsel with the Kansas Hospital Association, said the Senate bill applicable to care of patients under the age of 18 was drafted despite lack of evidence that issues raised by Crosier had arisen in any Kansas hospital or medical care facility.

‘Bill questions motives’

Delivery of compassionate and empathetic care for patients doesn’t require a piece of legislation, said Emily Riegel, medical director of pediatric palliative care at the University of Kansas Health System. The bill, she said, uses a blunt instrument of statute to disrupt tender conversations and difficult decisions between a family and physician.

“This bill, in its very existence, questions the motives and intentions of extensively trained, highly skilled, profoundly compassionate physicians, nurses, social workers and chaplains, and in doing so, drives a wedge between these providers and families,” Riegel said.

Lt. gov. supports bill

Colyer, a craniofacial surgeon and Republican lieutenant governor, endorsed the Senate bill. He said the measure was necessary to counter a system of medical care that allowed someone other than parents to decide whether a child’s life held value.

“When I deal with a patient and the family where it is unlikely the child will survive very long, I am obligated to provide the best medical care, provide excellent, realistic communication with parents, and to respect their wishes,” Colyer said. “Part of being human is that we will not all make the same decision in the same circumstances. In the end, I must respect that the parents are best to make life-and-death decisions for their children.”

Another mother agrees

Brenda Spurlock, a Topeka mother of eight children, said her daughter, Tatum, was prenatally diagnosed with Trisomy 18 - the same syndrome that afflicted Simon Crosier. Taken into consideration with several other medical realities, Tatum was given a fatal diagnosis before birth. She recently celebrated her ninth birthday.

“Tatum has far surpassed any of the prenatal and postnatal prognoses that were given to us,” Spurlock said. “Every parent of a medically fragile child should be aware of the choice to sign a DNR for their child. But I stand firmly against medical professionals making a life choice for an infant or child based on a prenatal diagnosis or set of tests.”