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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.”

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.

Simon & family

baby Simon Crosier with family

It very rarely happens, but the vote count on 2 pro-life bills was misrecorded by the official Kansas legislative website and has now been corrected.

An even higher pro-life vote resulted with the correction. The Senate vote for SB 437, Simon’s Law, appears to be the highest in many years for a substantive pro-life measure.

Simon’s Law will insure a parent gives permission before any DNR  (Do Not Resuscitate) order is put on a minor’s medical chart, and that a request to disclose the existence of any hospital “futility” policy is honored.

Simon Crosier’s parents, Sheryl and Scott, have advocated for this bill to protect parental rights, and to warn about medical discrimination against children with chromosomal conditions labeled as “incompatible with life.”

As of Tuesday, 7p.m. the official final tally for SB 437, Simon’ s Law, for the vote taken today in the Senate is 37-3:

Yea – (37):
Abrams, Arpke, Baumgardner, Bowers, Bruce, Denning, Donovan, Faust-Goudeau, Fitzgerald, Haley, Hawk, Hensley, Holland, Holmes, Kerschen, King, Knox, LaTurner, Longbine, Love, Lynn, Masterson, McGinn, Melcher, O’Donnell, Olson, Ostmeyer, Petersen, Pilcher-Cook, Powell, Pyle, V. Schmidt, Smith, Tyson, Wagle, Wilborn, Wolf.
Nay – (3)
:
Francisco, Kelly, Pettey.PP wrong way

SB 436 will make permanent a KDHE selection priority for full-service public health clinics and hospitals to receive Title X federal reproductive health money.

This issue of state budget authority to make this priority was sued by Planned Parenthood in 2011 on behalf of over 1/3 million dollars that they claimed “belonged” to them.  Planned Parenthood lost and Kansas won in March 2014 with a ruling from the federal Tenth Circuit Court of Appeals.

SB 436 passed today on purely partisan lines, with all Democrats opposing the measure. The official final tally for the Senate vote is 32-8:

Yea – (32):

Abrams, Arpke, Baumgardner, Bowers, Bruce, Denning, Donovan, Fitzgerald, Holmes, Kerschen, King, Knox, LaTurner, Longbine, Love, Lynn, Masterson, McGinn, Melcher, O’Donnell, Olson, Ostmeyer, Petersen, Pilcher-Cook, Powell, Pyle, V. Schmidt, Smith, Tyson, Wagle, Wilborn, Wolf.
Nay – (8):
Faust-Goudeau, Francisco, Haley, Hawk, Hensley, Holland, Kelly, Pettey.

To contact your Senator about these votes, use the roster here.

baby SImon Crosier died to a secret DNR

Baby Simon died due to a secret DNR order

The Kansas Senate has approved two pro-life bills: SB 437, Simon’s Law, and SB 436, prioritizing public clinics for Title X money that Planned Parenthood had claimed in 2011 was “theirs.”

The Senate passed both bills provisionally Monday with a final vote tally for both scheduled for Tuesday.UPDATE, State Legislative website error corrected Tues. 7pm: Final tally: SB 437,Simon’ s Law, passed 37-3 and SB 436 passed 32-8.

Sen. Jacob LaTurner (R-Pittsburg) was bill carrier for Simon’s Law, adopted from a measure originally filed in Missouri. Simon’s Law would:

  • prevent children from being denied life-sustaining care through DNR (Do Not Resuscitate) orders issued without parental knowledge or permission; and
  • require hospitals and medical facilities with policies about withholding life-sustaining treatment to disclose such policies upon request.
Sen. LaTurner

Sen. LaTurner, pro-life bill carrier

“I think this is a very good piece of legislation, very necessary to make sure that this doesn’t happen to any children in the future in the state of Kansas,” LaTurner said, after detailing the in-hospital death of baby Simon Crosier, using the words of his mother, Sheryl Crosier.

Kansans for Life had presented a collection of tragic accounts of how medically-fragile children were harmed –or  had died!– due to “secret” DNRs.  See personal testimonies and blog posts, here and here.

Simon’s Law does not criminalize any actions of doctors or hospitals; it merely sets in law the same process already in state statute for guardians when life-sustaining care is threatened to be denied to their wards.

During Monday’s floor debate, consternation about the bill came only from pro-abortion regulars, Sen. Vicki Schmidt (R-Topeka) and Sen. Laura Kelly (D-Topeka) who are each married to Kansas physicians. (No current Kansas senators are physicians or nurses by profession.)

Sen. Schmidt opened her comments on the floor by asking if, under Simon’s Law, a child in an emergency room must be kept alive if he/she had arrived without a parent. The answer was, certainly, yes! And isn’t that what every parent should be able to assume will happen? Yet Sen. Schmidt found it troubling!

Sen. Schmidt

anti-life Sen. Vicki Schmidt

Schmidt also tried to raise fears that foster parents or the state family agency would be unworkable as petitioners. However. the protocol to petition the court on behalf of a child in need of treatment, applies smoothly for those “acting in the place of” parents. Thus was the sum of her objection to Simon’s Law

To explain why no entity opposed Simon’s Law, Sen. Kelly made a false claim that “the process for it was too rushed,” with only one day’s notice given for the March 3rd hearing –thus prohibiting all stakeholders from testifying. That was both absurd and provably false!

  1. There’s a myriad of medical interest lobbyists at the Capitol who learned on Feb 10 that Simon’s Law was in process and had plenty of time to prepare testimony.
  2. Moreover, KFL records show the Senate Health committee secretary specifically notified all committee members (including Kelly) and 50 other interested parties on Feb 23–not March 2 as Kelly claimed–about the Simon’s Law hearing.

HOSPITALS HIDING
Sen. Kelly said that Children’s Mercy Hospitals in Kansas City, MO and St. Louis. MO, as well as the SMS Missouri health network had opposed the Missouri version of Simon’s Law, and had discussed their concerns with her. However, the superficial medical opposition to the Missouri version has seemed to evaporate toward the Kansas version, perhaps due to clarifying definitions and conflict protocols from KFL not in the original Missouri version.

On the Senate floor, Health & Public Welfare chairman, Sen. Michael O’Donnell (R-Wichita), rebutted Sen. Kelly’s claims of “committee process abuse”and said none of her named entities–or any other party– has ever yet to contact him with concerns. Most observers realized Kelly’s claim of abuse of process was a weak attempt to excuse why she will be passing on tomorrow’s final vote.

The unique situation in which a Kansas pro-life bill has gone unchallenged in committee may actually reflect reluctance by physicians and hospitals to state openly:

  • their unwillingness to relinquish sole control over DNRs, as well as
  • prove that a pernicious medical elitism and bias exists toward patients they believe are not “worthy” of living.
Sen. Ostmeyer

pro-life Sen. Ostmeyer

Pro-life Sen. Ralph Ostmeyer (R-Grinnell) alluded to physicians who issue DNRs in order to “put parents (not the child) out of their misery.” Sen. Ostmeyer insisted parents deserve to make the final call, adding,”Don’t let the doctor play God.”

PLANNED PARENTHOOD FUNDING ATTEMPT
The second bill passed is SB 436, which targets Title X contracts to provide comprehensive care to the indigent.  (see KFL blogs here and here and KFL testimony)

Kansas’s right to prioritize full-service providers was upheld in 2014 by federal appellate court after Planned Parenthood sued the budget allotment —and lost.

In Kansas, federal Title X reproductive health funds go first to full-service facilities, mainly public health clinics, and then public hospitals. The Kansas legislature has annually budgeted for this since 2011 (after 4 years of pro-abortion governor vetoes).

The point of SB 436 is to make permanent in statute what has been an annual budget item. On behalf of her 26 Senate co-sponsors, Sen. Caryn Tyson (R-Parker) was the bill carrier.

As she had attempted in committee, abortion supporter, Sen. Marci Francisco (D-Lawrence) once again tried to amend SB 436 to create a new revenue stream for Planned Parenthood. The amendment failed.

Senate committee chairmen O’Donnell & Masterson expedited pro-life bill hearings

Pro-life Senate chairmen,  O’Donnell & Masterson

Pro-life Senate Public Health & Welfare chair, Mike O’Donnell (R-Wichita) and Senate Ways & Means chair, Ty Masterson (R-Andover) expedited committee passage of 2 pro-life Kansas bills this week.

On Wednesday, March 9, the Senate Public Health & Welfare committee passed Simon’s Law, SB 437, a bill addressing parental rights and life-sustaining treatment for minors.

Only one committee member, Sen, Laura Kelly (D-Topeka), voted against passage. Sen. Kelly complained that medical opposition had NOT come forward to oppose this eminently reasonable and protective bill!

Simon’s Law was named for a baby, Simon Crosier, who was allowed to die due to a DNR (Do Not Resuscitate) medical order issued without knowledge or permission of his parents; they believe Simon was discriminated against due to his Trisomy 18 condition.

Simon Crosier & parents

Simon Crosier & parents

Kansans for Life brought the committee many compelling testimonials from other families whose medically fragile children were harmed and/or denied medical resuscitation– due to negative “quality of life” value judgments from physicians and hospitals. Simon’s Law will do two important 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, upon request, a facility must disclose any existing written policy on denial of life-sustaining treatment.

The Senate Public Health & Welfare committee added clarifying language defining futile care and a process for DNR conflict resolution. The full Senate is expected to vote on Simon’s Law within days.

BILL THAT PLANNED PARENTHOOD HATES

Anti-life Senators Kelly & Francisco

Anti-life Senators Kelly & Francisco

On Tuesday, March 8, the Senate Ways & Means Committee passed out a pro-life bill that would make permanent the way the state health department, KDHE, assigns grants using Title X federal funding.

SB 436 codifies the original 2007 Huelskamp-Kinzer proviso, prioritizing comprehensive care facilities as Title X recipients. The proviso was annually passed– but line-item vetoed– until signed into law in 2011 under Gov. Sam Brownback.

Planned Parenthood sued in 2011 to get that Title X money which it no longer qualified for. The Tenth Circuit Court of Appeals denied their claim in 2014. The ruling vindicated Kansas, and what former KDHE secretary, Robert Moser, had maintained: “Title X was not intended to be an entitlement program for Planned Parenthood.

SB 436 prioritizes that full-service public clinics and hospitals are first in line for Title X reproductive-services money. Remaining money is secondarily prioritized to private, full-service clinics and hospitals. The measure strengthens local ‘safety net’ health clinics.

The Senate Ways & Means committee passed SB 436 with Senator Marci Francisco (D-Lawrence) as the only no vote. This bill is also expected to get a vote from the full Senate in short order.

During committee action, Sen. Francisco, with support from Sen. Laura Kelly (D-Topeka), had offered an amendment to SB 436 that would have created a brand new KDHE funding stream for Planned Parenthood! The committee soundly defeated that amendment.

Simon's Law hearing Sheryl Crosier

Sheryl Crosier, Simon’s Law

The Kansas legislature reconvened for the second half of the session and Kansans for Life testified in hearings for two pro-life bills.

On Thursday, the Senate Public Health & Welfare committee held a hearing on SB 437, Simon’s Law, a bill to insure that the issuance of any Do Not Resuscitate order (DNR) for a minor has parental consent.

Since baby Simon’s death five years ago due to unjustifiable denial of care, Sheryl Crosier, his mother, has been in touch with a myriad of other families whose

medically fragile children were harmed and/or denied medical resuscitation– due to negative “quality of life” value judgments from physicians and hospitals.

Simon’s Law, SB 437, was introduced by Sen. Jacob LaTurner (R-Pittsburg), who thanked Crosier for her commitment to the issue and her bravery in describing for the committee the events involved in her son’s death.

Sen LaTurner

Sen. Jacob LaTurner

Her testimony was indeed both shocking and gut-wrenching for those in the packed committee room: Sheryl and her husband discovered–after Simon’s demise– that life-sustaining care had been denied to him due to a secretly-placed DNR based on his status as an infant with Trisomy 18. (See details here and read more in her book: I am Not a Syndrome, My name is Simon.)

Crosier’s experience triggered the production of a 2014 film  called Labeled,” on the topic of the medical discrimination against children with Trisomy 18, Trisomy 13 and related chromosomal disorders. (See info on these conditions here.)

Kansans for Life is promoting Simon’s Law, on behalf of these families– as well as physicians and researchers– who want parents assured of “an environment that allows medical decisions to be made in an ethical and transparent way.”  (Read KFL testimony here, and numerous heart-breaking actual accounts submitted to the committee here.)

The committee will likely work on the bill next week.  Contact info is here for Senate Health committee members, so you can urge them to pass Simon’s Law, SB 437.

U.S. Rep. Tim Huelskamp

U.S. Rep. Tim Huelskamp

BILL THAT PLANNED PARENTHOOD HATES
On Wednesday, March 2, the Senate Ways & Means Committee heard testimony from Kansans for Life supporting SB 436. This measure would make permanent the way the state health department, KDHE, assigns grants using Title X federal funding.

First passed in 2007 as the Huelskamp-Kinzer amendment, SB 436 prioritizes that full-service public clinics and hospitals are first in line for Title X ‘reproductive-services’ money. Remaining money is secondarily prioritized to private, full-service clinics and hospitals.

The emphasis is on providing comprehensive health care for Kansans who qualify for Title X, and for strengthening ‘safety net’ health clinics.

The legislature annually passed the Huelskamp-Kinzer amendment only to have it vetoed by pro-abortion governors, until pro-life Gov. Sam Brownback took office in 2011.  It has been approved in the budget every year since.

Planned Parenthood of Kansas Mid-Missouri (PPKMM) sued the Title X prioritization because they cannot provide the comprehensive care now required. During litigation, however, PPKMM continued to receive over a million dollars when Kansas was forced by an activist court to continue contracting with them.

The Kansas Attorney Generals’ office strongly defended the measure in federal district court, and on appeal. Dr. Robert Moser, then-KDHE Secretary who was named in the lawsuit, justified the state’s position, stating,

“Title X was not intended to be an entitlement program for Planned Parenthood.”

Sen. Caryn Tyson

Sen. Caryn Tyson

The Title X prioritization of the Huelskamp-Kinzer amendment was finally upheld in a ruling from the federal Tenth Circuit Court of Appeals in March 2014. After PPKMM’s loss, they dropped further appeals. Read more here.

With 26 Senate co-sponsors, Sen. Caryn Tyson (R-Parker) introduced SB 436, in which the Title X budget prioritization is put permanently into statute.

KFL testimony supporting SB 436 is here. Contact info is here for Senate Ways & Means committee members to encourage passage of SB 436.

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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