By Kathy Ostrowski, Legislative Director, Kansans for Life

Editor’s note. This is the latest in an ongoing series of stories about a proposed law in Kansas that would prevent children from being denied life-sustaining care through DNR (Do Not Resuscitate) orders issued without parental knowledge or permission.

Kansas parents that we have been conversing with about an important new bill, Simon’s Law, are absolutely stunned to discover that a DNR (Do Not Resuscitate) or DNAR (Do Not Attempt Resuscitation) order can be placed in a child’s medical chart without the permission of any parent.

Simon’s Law is named for a case of this tragic deception which happened to the Crosier family five years ago. Simon, their three month old son with Trisomy 18, died due to a DNR order that was neither discussed with, nor permitted by, his parents.

Simon’s death happened in St. Louis, but his dad is a Kansas native, with many extended family members who are Kansas residents.

While KFL was actively educating about Simon’s Law, new relevant scientific articles about this DNR/DNAR issue have been published. The article I will discuss here, published March 17 in BioEdge, reveals the shocking results of a survey of neonatologists— those pediatricians with special training in newborn intensive care.

BioEdge writes:

“The authors of the article are sympathetic to the view that unilateral DNAR [DNR] orders are in certain circumstances ethically permissible. What’s more, they found that most American pediatricians agree with them.”

In essence, physicians entrusted to evaluate and treat infants in critical care situations willingly expressed their opinions that it is ethical for them to deny care “unilaterally” (without parental consultation and permission). Granted, these survey results came from just one sixth of the 3,000 members of the American Society of Pediatrics Section of Perinatal Medicine who were sent surveys, but it surely is frightening.

· 77% said it was ethically permissible to issue a unilateral DNAR order where doctors were treating an infant for whom survival was felt impossible;

· 61% said it was ethically permissible when survival was felt ‘unlikely’;

· 57% said a unilateral DNAR would be permissible if no curative treatment was available;

· 25% said a unilateral DNAR order would be permissible based solely on neurological prognosis.

The many testimonies submitted to the Senate Health & Public Welfare Committee in support of Simon’s Law demonstrate that children have tragically died based on negative “quality of life” assessments by the medical community– particularly children with chromosomal disorders—even Down Syndrome.

Some physicians, in the context of highly expensive remedial treatment, believe they are responsible for “taking the matter in hand” and ending the life of a child whom they consider a burden, but whom the parents see as a gift. Highly negative medical labeling–profiling– of both the unborn and newborns as “incompatible with life,” regularly occurs, in spite of evidence to the contrary from those with such conditions who survive for months, years and even decades.

On its face, a DNR/DNAR medical order for a minor that is issued without written permission indicates a desire to

1. sidestep obtaining written parental consent, under the excuse of the emotional difficulty in discussing the matter; or

2. avoid admitting that the physician/facility is committed to denial of life-sustaining treatment; or

3. both.

Simon’s Law will protect lives threatened by medical discrimination and usurpation of parental rights by pediatric specialists claiming an “ethical” basis for denying life-sustaining care.