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Sen. Jacob LaTurner, chair of Senate Federal & State Affairs committee, with Zach & Brenda Spurlock

Today’s hearing on “Simon’s Law” in the Kansas Senate Federal & State Affairs committee room was a tale of two little boys.

One dear boy, Simon, was alive only in cherished memories detailed to the committee. Another, Zach, –whom medical experts claimed would never be more than a “vegetable”—jiggled and squirmed in his seat and would smile at various people in the room, and say “Hi!”

Baby Simon

Baby Simon

Today, Sheryl Crosier was the key witness as Kansas renews consideration of Simon’s Law, SB 85. Simon’s Law passed the Senate 37-3 last spring but didn’t get through the House process in time to become law. Thus hearings started anew this year. Simon’s Law preserves the rights of parents in the issuance of “Do Not Resuscitate ”(DNR) orders to minors.

Sheryl very poignantly recounted (or, perhaps more accurately, relived) how her baby son, Simon, died six years ago in front of her and her husband, Scott, at the hospital where he had lived his entire young, three months of life.

Simon & family

Simon Crosier with family

After the heartbreak of burying their child, the Crosiers discovered that the reason baby Simon was dead was because, without their permission, a “Do Not Resuscitate” (DNR) order had been placed in his medical chart.  The bad news mounted: the hospital had a written “futility” policy concerning when life-sustaining procedures would not be given.

Simon had been diagnosed with Trisomy 18 disorder three days after birth. For many years, such children were immediately labeled as having a lethal condition, and were not treated. The medical community is slowly starting to abandon labeling children like Simon as “incompatible with life,”  according to a brand new article this week that appears in JAMA (the Journal of the American Medical Association.)

Thus began the Crosiers’ crusade to alert parents, especially those with medically fragile children, that a death by secret DNR could happen to them.

Along the way, other parents, researchers and doctors have joined in the crusade to pass Simon’s Law.

The case was strongly made in committee today with a large number of proponents, including Kansas Lt. Gov. Jeff Colyer, who is a surgeon. Four medical groups have supported Simon’s Law since last year. The committee will “work” the bill for passage as early as this coming Monday.

tatum-and-zach

Tatum & Zach Spurlock outstripped “expectations”

The truly beautiful side note to the hearing was the presence of a boy who has far outstripped his “expectations.” Kansans Jack & Brenda Spurlock, whose nine- year-old daughter Tatum has outlived her “fatal” diagnosis of Trisomy 18, came to the Capitol to testify for Simon’s Law.

Tatum was not present today, due to the flu, but her brother, 7 1/2 year-old Zach, melted the hearts of the whole room.

Zach was born without a significant portion of his skull, and with a large occipital encephalocele that contained a portion of his brain. He was predicted to have seizures and other afflictions his whole life. Not so! Zach stayed throughout the one-hour hearing, exhibiting “best behavior.” 

The committee truly witnessed the joy of  a life that has too often been labeled as not worth sustaining, and the tragedy of taking a life due to preconceived “quality of life” judgments.

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Krissy Krotzer

Krissy Krotzer

Simon’s Law insures that life-sustaining treatment (resuscitation, nutrition, medicine) will not be denied to minors without parental consent. This bill has already passed the Kansas Senate 37-3 and work on its passage in the House will continue when legislators return April 27.

The testimony for Simon’s Law in Kansas documented a consistent medical bias toward children with chromosomal disorders. Researchers and parents described how these children were denied scheduled surgeries after their genetic conditions were verified. Furthermore, they were denied treatment to save their lives after DNR (Do Not Resuscitate) orders were secretly placed on their medical charts.

The prevailing medical viewpoint on children with trisomy conditions is almost uniformly negative, essentially recommending provision of comfort care only. Kansas legislators learned that families of these children often had to fight for their child’s life both before birth, when being urged to abort, and after delivery, when physicians refused requested interventions.

Dr. Martin McCaffrey is a pro-life neonatologist with over 20 years in this arena. He supports Simon’s Law with this perspective: It is shocking that the neonatal community in the United States has reached a point where a significant number of providers feel it is justified to place a unilateral Do Not Resuscitate [or attempt resuscitation] order on a child’s chart, based on a neurologic prognosis which parents are perfectly willing to accept, but the medical team does not.”

Consider the stresses imposed by the medical community on the family of Kristina (Krissy) Krotzer. Her mother, Terre, writes:

“Our daughter Kristina was diagnosed prenatally with Trisomy 18. At the time they confirmed the diagnosis via amniocentesis they let us know that although we were at 22 weeks it would still be acceptable to “interrupt” the pregnancy, i.e., terminate, because the fetus was still smaller than a typical “20 week fetus” but we would need to decide quickly. We declined.

Later in our pregnancy we began preparing for our daughter’s birth. In our discussion with the doctors we were very clear that we would do whatever it took to get our daughter into this world alive. We didn’t know how much time we would get but it was important to us to give her life if at all possible.

The doctor refused to consider c-section as she said it was a non-viable pregnancy and even refused to monitor my daughter during labor because, and I quote, “I don’t want you to know if she dies or not.” 

This doctor was fired.

A new doctor agreed to the c-section if necessary. We scheduled a day to induce (at 39 weeks) so that this doctor would be guaranteed to be there as he was the only one we trusted to give our daughter a chance.

We were very clear that our birth plan was to get her into this world alive and from there decide –based on her actual overall health and medical needs– what to do each step of the way. Never could anyone have interpreted our desires to include a Do Not Resuscitate order.

Labor began and our baby’s heart rate dropped with each contraction. It was decided a C-section was necessary. Our daughter was born soon after. She presented with Apgar scores of 5 and 8 and needed only a small amount of “blow by” oxygen. We spent time together and she was taken to the intermediate care NICU for more evaluation and monitoring. She did fine, and we went home 5 days later with our tiny 3lb. 8oz. little girl.

Krissy 16th bday

Krissy’s 16th birthday

Today Krissy is 16 years old and a sophomore in high school. While she’s had a handful of medical issues, Kristina has done well.

Four years ago I was looking through the medical records from Kristina’s birth and found that– unbeknownst to us– the hospital had placed a DNR on Kristina prior to her birth.

This DNR was not our choice or decision and if I hadn’t looked back at the  records, we never would have known. To this day, every time Kristina is hospitalized we get challenged over the fact that we have her listed as a full  code.

We were once told by a physician, ‘you’ve had 10 good years with her, isn’t that enough?’

Krissy has a happy, healthy, full quality of life. When that changes, our decisions might change. But either way it should always be our choice.”

Terre Krotzer expresses the sentiment of many families who testified in support of Simon’s Law. Just imagine how you’d react to doctors who think your child has lived long enough. Imagine having to constantly fear that medical personnel might refuse to sustain the life of your child.

That’s the fear and apprehension that Simon’s Law will allay.

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Simon napping with his father, Scott Crosier

Scott Crosier napped with baby Simon

Recent posts have revealed the facts surrounding secretly placed “Do Not Resuscitate” (DNR) orders without parental notice or consent that resulted in the deaths of Simon Crosier and Megan Barnes. (see here and here)

Testimonies from both families, as well as detailed testimonies from other families and supportive physicians and researchers, were submitted to the Kansas Senate Public Health and Welfare committee urging enactment of ‘Simon’s Law.’ (see here)

By an overwhelming bipartisan vote of 37-3 on March 22, the Kansas Senate passed Simon’s Law to

  1. insure no DNR order can be issued to a minor without consent of parents/guardians, and
  2. require that a hospital/medical facility, upon patient request, disclose any ‘futility policies’ in place.

The House can take action on the bill when the Kansas legislature reconvenes April 27.

There was no opposition presented against Simon’s Law in committee. While not one medical group or facility testified at the Senate hearing, a stealth campaign to kill this bill is now being waged by lobbyists for various hospitals.

Their position is that Simon’s Law is unneeded (or even harmful!) and that reasoning was encapsulated in an unsigned March 29 editorial by the Topeka Capital Journal (TCJ), a prominent Kansas newspaper.

Neither proponents of the bill, nor Kansans for Life, were contacted by TCJ to explain the need for Simon’s Law within the current climate in which certain newborns, and children of other ages, are labeled “unworthy” of life-sustaining care.

BAD FACTS= BAD EDITORIAL
The TCJ editorial asserted that, currently, DNR “orders aren’t to be placed in a minor’s chart without full disclosure to the parent or guardian.” 

However– in fact– disclosure does NOT always occur, as the cases brought to the Senate Health committee illustrate. In these instances, later verified by researchers, children lost their lives and necessary medical services, because negative value judgments were made about the children with chromosomal abnormalities.

Furthermore, “disclosing” a DNR is just stating that a DNR is being imposed; it is not seeking permission.

The TCJ editorial tries to claim the high ground by asserting Simon’s Law could “inflict unnecessary suffering upon children.” And as the final kicker, the editorial scolds –in the identical manner pro-abortionists do– that legislators are “primarily untrained in the area of medicine” and “shouldn’t play God.”

Scott Crosier, the father of Simon Crosier, for whom the Simon’s Law legislation is named, rebutted the editorial in a letter published April 9. “Unfortunately, hospitals’ secretive futility policies DO give them the ability to place DNRs [on minors] without [parental] knowledge or consent despite the rhetoric presented.”

Simon’s dad painfully experienced what the TCJ editorial seems ignorant of: that denial of life-sustaining treatment is being applied based on value chromosome sloganjudgments, specifically by those “with medical training.”

FUTILITY JUDGMENT BASED ON OPINION
Mr. Crosier wrote, “For clarification, a futility policy allows a hospital and its physicians to make any decision regarding the treatment of a patient they deem to be futile without any input from the patient or family. Bottom line is, hospitals are making business decisions when the lives of our children are at stake. Our physician’s favorite statements when Simon was in the NICU were, ‘I don’t know,’ ‘Not for Simon,’ and ‘Incompatible with life.’  Cold harsh comments to hear regularly when you are pleading with them to do everything they can to help your son.”

Mr. Crosier fundamentally disagrees that legislators need any medical training to recognize the need for Simon’s Law:

If the hospitals are not going to be completely open and transparent concerning their policies, then we clearly need our government to step in and protect our rights as parents.”

TCJ did not include this last relevant paragraph from the letter they published from Simon’s dad: “The physicians and hospitals have government protections through many federal and state laws but for some reason Simon’s Law would be a burden for them to get written consent from a parent for a DNR? This makes NO SENSE! If you want to protect your child’s human rights and your parental rights, supporting ‘Simon’s Law’ really is a no-brainer.”

Anyone with even limited experience with being hospitalized knows that the facilities and doctors do indeed insist on signed permission, often multiple times in just one stay. The hospital lobbyists really have no credible excuse for not getting written parental permission, which is presumably why they never came to a public podium to testify about Simon’s Law.

Crosier’s unpublished paragraph completely undercuts the entire TCJ editorial. Is that why it was omitted?

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Megan Barnes, 1985-2004

Megan Barnes, 1985-2004

Simon’s Law, Kansas Senate Bill 437, would require parent permission before a minor is coded as a Do Not Resuscitate (DNR) and would also require hospitals and other medical facilities, upon request, to disclose any existent “futility” policies. (See more here.)

This is the latest in a series from Kansans for Life that looks at the real lives affected when Do Not Resuscitate (DNR) orders are unilaterally issued by physicians. In the following, Ann and Frank Barnes share the details of how this practice ended the life of their precious daughter, Megan.

“Both our beloved daughter, Megan, and Simon Crosier– for whom the Simon’s Law legislation is named– were born with the same rare syndrome but Megan’s diagnosis was not immediately detected.  She was full term but small, with a ventricular septal defect and a minor lip defect.   Such signs alerted doctors of possible chromosomal problems, so a blood sample was sent for genetic testing.  We were, however, able to bring her home at a week old.

Megan was over two months old when we heard the words “Trisomy 18” and the heartbreaking news that these babies fail to thrive and her life would be brief– up to a year at most.  When questioned as to what would cause her death, the response was a vague, “these babies don’t do well.” Hospice was suggested, but accepting Hospice care would be accepting the diagnosis which our hearts were not ready to do.

She was our daughter and loved, perhaps even more so, because of those predictions.

The fear of Megan dying weighed heavily on our hearts until we stopped waiting for her to die and began finding ways to help her. But in 1985 there was a lack of information about survivors living with this syndrome. We felt alone and longed to meet another child like Megan.

Her geneticist gave us a newsletter from the Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) when she was about 6 months old.  What a life changer! SOFT became both a life-line of information and a second family, with children like our daughter.  SOFT also has a compassionate medical advisor who has helped families for over three decades.  Because of the tremendous sense of worth given to each child at the annual SOFT conferences, we attended many, and still do.

I cannot tell you the number of times we said how glad we were to have Megan.  She gave us purpose, and taught us about patience, perseverance, resilience, unconditional love, and more.  She had a sweet disposition and, like any child, enjoyed attention and praise.  Though she could not talk, she definitely let us know her preferences.  All-time favorites were the Disney video, Beauty and the Beast, a Texas Instrument toy– replaced more than once, and her 17th birthday party.  She enjoyed music and movement and the activity of physical therapy sessions.

Megan was content and knew she was loved, and it was obvious that what she valued most was being with people, especially those who loved her.

On Christmas Day, at age nineteen, Megan was hospitalized for virus-caused dehydration, in a pediatric intensive care unit at a major teaching hospital.

She died four days later.

We were devastated.

Only after her death did we request her hospitalization records and learned the horrible truth that our wishes for life support intervention had been overruled by a verbal order from the “attending” physician to his staff.   Megan had been issued a Do Not Resuscitate (DNR) order without our knowledge or consent. 

Had there been a requirement for a parent signature on a life support order in that hospital, this would not have happened.

It added so much more pain to our grief to learn that our daughter died because we trusted the wrong physician.  Instead of providing needed intervention, he misled us about what was happening, allowed her condition to decline, and then said there was nothing that could be done.

MEGAN’S LAST GIFT
Our daughter’s end-of-life lesson is about the vulnerability of parents and their children when the child is hospitalized. Parent-physician trust requires transparency and respect.

We believe any physician (hospital, medical society or hospital association) opposed to the parental signature requirement on a life support order, as proposed in Simon’s Law, has something to hide; and in some cases wants to control the outcome due to personal views about a particular disability or illness.

Megan outlived the survival statistics we were given when she was an infant, and she is not the only one with Trisomy 18 or Trisomy 13 to have done this as a number of survivors are now young adults!  They have health issues, developmental challenges and a life-limiting disorder, but most importantly, they are living evidence that it is incorrect to claim these disorders are universally lethal.

Clearly, the risk of a Do Not Resuscitate (DNR) code being imposed without parental knowledge or consent is increased for children like Megan and Simon. And this dire risk also applies for any child who suffers critical injury or illness.

We fully support Simon’s Law to help prevent this injustice from happening to another family.”

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Kansas parents that we hStop dnrave 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 months old son with Trisomy 18, died due to a DNR order that was neither discussed with, nor permitted by, his parents. (Read more here and here.)

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.

Sheryl & Scott Crosier treasured their son, SImon

Sheryl and  Scott Crosier treasured their son Simon

  • 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.

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Simon bookCan a DNR (Do Not Resuscitate) order be placed in your child’s medical file without your knowledge? YES!

Can your child be denied life-sustaining care based on a quality of life assessment by a hospital ethics board? YES!

Are both situations outrageous and scary? YES!

The remedy? Simon’s Law, a pro-life bill filed and being promoted in 2 states: Kansas and Missouri.

Simon was a 3-month-old precious boy who was starved, given antagonistic medication and not resuscitated due to the secret placement of a DNR order on his medical chart.

And why? Because Simon was labeled as suffering under a “syndrome”of an extra gene, Trisomy 18… and thus discriminated against as not worth life-sustaining care.

Simon’s family watched as he expired before their eyes and only later discovered in horror that a DNR had been placed on his chart which they in no way wanted or had even discussed.

Simon’s Law would do 2 simple things:

  1.  prevent any medical facility or practitioner from secretly placing a DNR order for children under 18 years of age without written consent of at least one parent or guardian.
  2. require that a facility disclose, upon request, any existing written policy on denial of life-sustaining treatment.

Under the second provision, a family would be able to better determine whether their child is at any risk of any refusal to treat (i.e.”futility” policies) at the medical facility. (read more about such policies here and here)

Imagine your eight-year-old sustains critical injuries from a skateboard collision,  or your sixteen-year-old is involved in a car accident with life-threatening injuries. Wouldn’t you want to be fully engaged in the decision making, rather than trusting unknown medical professionals without any mandate to seek your consent for non-treatment?

ALERT: Kansans for Life is seeking additional support for Simon’s Law this week from interested citizens and health care personnel for an upcoming Senate hearing. Email any testimony to kfltopeka@gmail.com and include full contact information.

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POLST TPOPP pink formA medical form targeting the elderly and chronically ill is being heavily pushed in Kansas by the Center for Practical Bioethics (more on this group in this post).

However, a new formal opinion from the Kansas Attorney General, Derek Schmidt, verifies that in two distinct areas the form contravenes current statutes that protect patients!

At a press conference Wednesday hosted by Kansans for Life, (see press release here) Rep. John Rubin (R-Shawnee), who had requested the A.G. opinion,

labeled the TPOPP form “misleading” and “deficient” and asked that it be recalled.

TPOPP is the acronym for “Transportable Physician Orders for Patient Preferences.” Its stated objective is to “improve the quality of care people receive at the end of life by translating patient/resident goals into medical orders.” TPOPP is printed on ‘hot-pink’ paper and is designed to be a permanent part of the patient file in all settings.

TPOPP is a form aligned with similar documents in other states supervised by a private entity, the National POLST Paradigm Task Force. These forms use a series of check boxes to indicate:

  1. whether the patient should be resuscitated (DNR),
  2. which of three basic levels of medical care a patient should receive, and
  3. whether the patient will get medically administered food and water.

It is items 1 and 3 where TPOPP runs afoul of Kansas law.

Under Kansas law, a  directive for DNR (Do Not Resuscitate) requires a witnessed and signed document excluding those who might financially gain by the death of the patient (K,S,A, 65-4943). TPOPP skirts these patient protections as well as eliminating the physician’s immunity from liability for not resuscitating–provided by a legal DNR under K.S.A. 65-4944.

Also, under Kansas law at K.S.A. 59-3075 (e)7), specific prerequisites are needed before guardians may withhold or withdraw life sustaining care.  TPOPP ignores this statute.

In essence, TPOPP purports to be physician orders, but it crosses over into legal areas– putting patients’ lives, and physicians’ careers, at risk.

WARNING
Unfortunately, significant medical groups and facilities across the state that should have been more vigilant and responsible, have already become partners and promoters in implementing TPOPP. (See list) Kansans for Life is notifying hospitals, medical facilities and physician groups about this new Attorney General opinion.

If you or someone you know has filled out a TPOPP form, you should seek counsel immediately on the legal effectiveness of this form. Patients, doctors and other health care professionals should be aware of the legal uncertainty that TPOPP presents.

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