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Archive for April, 2016

leg alertKansas legislation to regulate the independent practice of midwives currently includes pro-life language to prevent them from being able “to perform, induce or prescribe drugs for an abortion.”

It has been wrongly stated by some legislators that this ban is unnecessary because the scope of practice does not allow the provision of abortions. However, the rule of thumb when it comes to abortion, is that what is not specifically excluded, will be included.

Here is a letter to Kansas legislators from Mary Spaulding Balch, J.D., Director of State Legislation at the National Right to Life Committee, outlining in detail why this ban is vital and verifying that the idea of midwives doing abortions is actually part of the abortion movement’s plan:

“The National Right to Life Committee and Kansans for Life oppose passage of any bill dealing with the ‘scope of practice’ or ‘independent practice’ of any health care professional which doesn’t include language excluding abortion. We take this position because it has long been the strategy of the pro-abortion movement to use a broad definition of that ‘scope’ as a means to increase the number of lower health care professionals licensed to provide abortion services.

Scope or independence of Practice typically describes the procedures, actions, and processes that a healthcare practitioner is permitted to undertake in keeping with the terms of their professional license. If the health care professional is given the authority to provide ‘pregnancy related services,’ it will be argued by pro-abortion advocates that since abortion deals with a pregnancy and delivery (even though the baby is delivered dead), it is, therefore, within the scope of practice. Thus, an explicit exception is needed to avoid this from happening.

midwifeThe House Substitute for Senate Bill 402 (now folded into HB 2615) raises these concerns. It defines (on pg 152) the ‘Independent practice of midwifery’ to mean ‘the provision of clinical services by a certified nurse-midwife without the requirement of a collaborative practice agreement with a person licensed to practice medicine and surgery when such clinical services are limited to those associated with a normal, uncomplicated pregnancy and delivery, including:
(1) The prescription of drugs and diagnostic tests;
(2) the performance of episiotomy or repair of a minor vaginal laceration;
(3) the initial care of the normal newborn; and
(4) family planning services, including treatment or referral of male
partners for sexually transmitted infections.’

The language about services ‘associated with a normal, uncomplicated pregnancy’ can be argued to include the ability to perform an abortion of a normal, uncomplicated pregnancy which covers the vast majority of abortions performed.

As stated, the National Abortion Federation has long had a strategy for increasing access to abortion by expanding the scope of practice of lower health care professionals. For example, in December 1996, the National Abortion Federation (NAF), with funding from the Kaiser Family Foundation, convened a national symposium to explore how CNMs, NPs, and PAs could participate more fully in abortion service delivery nationwide. In 1997 they presented a symposium entitled, “The role of physician assistants, nurse practitioners, and nurse–midwives in providing abortions: strategies for expanding abortion access.” (National symposium, Atlanta, GA, 13-14 December 1996. Washington, DC: National Abortion Federation; 1997).

They even have a timeline illustrating some of the successful expansion: http://prochoice.org/health-care-professionals/clinicians-for-choice/resource-center/

There is even a ‘tool kit’ entitled “Providing Abortion Care: A Professional Tool Kit for Nurse-Midwives, Nurse Practitioners and Physician Assistants” (2009). It was developed as a guide for health care professionals who want to include abortion as being within their scope of practice.

Expanding the number of people who can provide abortion will increase the number of unborn children being killed. We strongly urge you to prevent this from happening by making it clear that it is not within the scope or independence of practice of lower health care professionals to provide abortion.”

Kansas legislators should heed this instruction and keep the pro-life language (on page 160 of HB 2615) in the midwife legislation.

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Heart stethPro-lifers across the nation have been reading our series of articles on the “Faces & Facts of Simon’s Law,” and are urging Kansas to protect children and empower parents by enacting this vital measure.

The state legislature returns to work Wednesday following a short recess. The Kansas Senate has already passed SB 437, Simon’s Law, by a notable bipartisan 37-3 vote last month. The bill will prevent minors from being denied life-sustaining treatment without parental permission and will require, upon request, disclosure of hospital policies on “futile care.”

Recently, four medical associations have published their strong support for Simon’s Law, see here. The following are some excerpts from their endorsements:

  • ACPEDSThe American College of Pediatricians informs that, “Once inconceivable, the practice of hospital staff placing a do not resuscitate (DNR) order on a child’s chart without the informed consent of the child’s parents or legal guardian is on the rise… increasingly predicated upon the ill-defined and subjective concept of ‘quality of life’ with one or more disabilities considered intolerable.”
  • AAPSThe Association of American Physicians & Surgeons writes, “care judged by some to be ‘futile’ is often life-saving, even if it does not restore full function… [When] there is a time when medical intervention provides no benefit, it is unethical and should be unlawful for a medical facility to determine that point unilaterally.”
  • NAPNThe National Association of Prolife Nurses asserts that parents have “a right to full disclosure and participation in the healthcare decisions of their disabled or severely ill children.”
  • The Kansas City (Kansas/Missouri) Guild of the Catholic Medical Association believes Simon’s Law “recognizes the right practice of medicine… the sacredness of life and the primary role Cath guildparents have in caring for a child. [F]acilities or practitioners cannot and should not determine that a patient’s life is no longer deserving of medical care.”

These medical group endorsements acknowledge that DNRs are very often being issued due to negative judgments about the kind of life the child will live—not upon a medical assessment of impending death. In shorthand, such judgments about ‘futility’ are qualitative, not physiological.

The families that submitted testimony for Simon’s Law recounted that too many medical personnel clearly viewed their child as a victim of disabilities, without a rewarding life–a view that the family vigorously disputed.

Neonatologist McCaffrey

Dr. McCaffrey

Neonatologist Martin McCaffrey regularly treats severely ill infants and counsels many families about Trisomy 18 and other related chromosomal conditions. He advises:

“ A medical team using its subjective prediction of future quality of life as criteria to make life and death decisions,and  forcing that determination is a tyrannical enforcement of prejudice towards children with disabilities.

The case which prompted Simon’s Law legislation is a prime example of such bias.

It is my sincere hope that Simon’s Law will pass. The only physicians and hospitals that would be impacted by this legislation are those employing unilateral [orders not to resuscitate].”

Knowledgeable medical groups and individuals agree that Simon’s Law is a necessary corrective measure.

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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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asst suicideKansas pro-lifers have become acutely aware of how legislation they support is under threat from courts acting like legislatures. Kansas has a host of excellent pro-life laws (see here) and that includes assisted suicide as a felony crime.

In the National Right to Life News Today, the role of the 2016 elections and the next nominee to the U.S. Supreme Court is examined  with respect to assisted suicide and even, involuntary euthanasia. Jennifer Popik, J.D. and Burke Balch, J.D. are the experts at the National Right to Life’s medical ethics division and they have authored a sobering look at the issue. Here are some excerpts:

-While the Supreme Court does indeed exercise judicial functions in a number of cases with low-ideological content – settling contract and patent issues, for example—when it comes to making “constitutional” rulings the body has gradually come to act more and more like a “Supreme Legislature.”

-Whereas in past decades presidential candidates often eschewed so-called “litmus tests” [for the U.S. Supreme Court] for how their appointees would vote on specific issues, instead talking generally about “judicial philosophy,” today those in both parties talk openly about a laundry list of positions anyone they’d nominate would have to take.

-For example, it is clear as daylight that if the Scalia vacancy is filled by a President Obama, Clinton or Sanders, there will be five votes on the 9-member body to strike down essentially all limits on or regulations of abortion, ranging from the Hyde Amendment through informed consent and parental involvement laws to the Partial-Birth Abortion Ban. Justice Ruth Bader Ginsburg contends that any law touching abortion differently than, say, prostate surgery invalidly constitutes “sex discrimination.”

-Less widely discussed is that the issue of assisting suicide will almost inevitably again come before the High Court. So while you might not live in one of the states where doctor-prescribed suicide is legal, if more states join the ranks of California, Oregon, Washington, and Vermont—and above all if 2016 sees the election of a president and Senate likely to use the next Supreme Court vacancy to nominate and confirm a justice sympathetic to euthanasia–there is the real risk the U.S. Supreme Court might well follow the Supreme Court of Canada recent decision holding there is a federal constitutional right to assist suicide.

-Whether in one sweeping decision or through a carefully paced step-by-step series, an ideologically committed Supreme Court majority might well echo the Canadian court in ultimately stripping states of their legislative discretion. They would no longer be able to protect those with Alzheimer’s disease or other judgment-impairing mental disabilities from being killed at the direction of their relatives, guardians, or perhaps “ethics committees” at health care facilities presently often empowered to cut off treatment and assisted feeding for those under their care who have no one to speak for them.”

Please read –and forward–the entire article!

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2015 Rally for Life 2015 Rally for Life urges ban on dismemberment abortion bans

Last April, Kansas became the first state to pass legislation barring the barbaric dismemberment method abortions. Now, under challenge  by pro-abortionists, that first-of-its-kind law, which is on hold, is about to be reviewed by the Kansas Supreme Court.

This ban prohibits the gruesome abortion method of tearing apart fully-formed, living babies– limb by limb– until they bleed to death.

The Unborn Child Protection from Dismemberment Abortion Act, model legislation drafted by the National Right to Life Committee, has since been enacted by Oklahoma, West Virginia, and (soon) Mississippi. This vital legislation has also been introduced in Pennsylvania, Minnesota, Idaho, Nebraska, Missouri, Louisiana, Rhode Island, and Utah.

Thus the impact of the ruling by our Supreme Court will extend beyond our state borders.

The premise of the Unborn Child Protection from Dismemberment Abortion Act comes from the U.S. Supreme Court Gonzales ruling. In that 2007 decision, the justices upheld a ban on partial-birth abortions by acknowledging that,

“the State may use its regulatory power to bar certain procedures and substitute others, all in furtherance of its legitimate interests in regulating the medical profession in order to promote respect for life, including life of the unborn.”

Abortion supporters have thus sought to find and secure in state constitutions a broader and more unassailable “right” to abortion.

pro-abortion judgesThat’s what happened in Kansas last June, when Shawnee District Court Judge Larry Hendricks blocked the ban on dismemberment abortions from going into effect.  Hendricks adopted abortion attorney arguments–literally–asserting that the Kansas state Constitution protects abortion even more fundamentally than the standard established by the 1973 Roe v. Wade decision.

The temporary injunction was obtained by the New York-based Center for Reproductive Rights on behalf of Kansas’ father-daughter abortionists at the Center for Women’s Health in suburban Kansas City.

The injunction allows three Kansas abortion businesses to continue to perform these grisly procedures — 629 last year–at a cost of up to $2,000 each.

That activist ruling by Judge Hendricks was left standing when the full Kansas Court of Appeals reviewed it and announced on January 22 that they were divided, 7-7.

However, pro-life Attorney General Derek Schmidt appealed the appellate decision to the state’s highest court. Schmidt argued that the appellate ruling does not make precedent and current abortion lawsuits remain in limbo without clear guidance. Yesterday, it was announced the appeal will be heard. (documents here) Here are the three questions that the state of Kansas has posed for the state Supreme Court to rule on:

  1. Does the Kansas Constitution create a right to abortion?
  2. If that right exists, does it clearly prevent government from regulating dismemberment abortions?
  3. Did the Court of Appeals wrongly accept the lower court’s facts and legal standard?

Our state Constitution was enacted in 1859, when abortion was illegal in Kansas and across the nation. Yet one radical judge of the Kansas Court of Appeals, G. Gordon Atcheson (writing to concur with the injunction against the dismemberment abortion ban) believes that the state Constitution is an “evolving” document with an “ever more enlightened understanding of humanity” and women’s “self-determination.”

Mary Kay Culp, KFL executive director commented, “The challenge we face is whether a majority of the Kansas Supreme Court will follow the U.S. Supreme Court’s holding that allows states to ban barbaric abortion methods, or whether it will follow Appellate Judge Atcheson’s opinion that the dismembering of unborn children comports with an ‘enlightened understanding of humanity’.”

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Ks Supreme Ct

The Kansas Supreme Court

Filed electronically after 5p.m. tonight, Monday, the Kansas Supreme Court has granted review of the appeal by the Kansas Attorney General in the matter of the Kansas Unborn Child Protection from Dismemberment Abortion Act. (documents here)

The hearing has not yet been set and both sides will file supplemental briefs to be submitted within 30 days. Here is the  summary of litigation thus far:

Pro-life Gov. Sam Brownback signed SB 95, the dismemberment method ban, on April 7, 2015 after it passed 31-9 in the Senate and 98-26 in the House. The law is not in effect.

The Overland Park Center for Women’s Health (CWH), the office of father -daughter abortion duo, Herb Hodes and Traci Nauser, filed suit against the ban in federal court and won a temporary injunction from Shawnee District Court Judge Larry Hendricks June 25, 2015.  Judge Hendricks adopted the arguments of the abortion attorneys hook, line and sinker.

Attorney General Derek Schmidt filed an appeal of that ruling, claiming that it is “a fantasy” that the Kansas state constitution of 1859 protects a right to abortion (much less one that upholds gruesome dismemberment of living, well-formed unborn children!).

The appeal was taken up by the Kansas Court of Appeals when the Kansas Supreme Court refused to intervene. On Jan. 22, 2016, the appellate court delivered a split ruling which meant the lower court temporary injunction would be upheld.

The Attorney General again filed an appeal, this time asking the Kansas Supreme Court to expeditiously review the appellate decision, asserting that

the Court of Appeals wasn’t truly split, but rather had ruled 7-6-1, finding there is no protection for abortion under the Kansas Constitution.

The Kansas Supreme Court needs to move expeditiously for several reasons, urges the A.G. filing; two other lawsuits filed by CWH (in 2011 and 2013) are lagging in state court and would be directly impacted by a decision about this so-called fundamental state right to abortion.

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unborn feel pain (2)Kansas abortion statistics for 2015 were released today by the Kansas Dept. of Health & Environment (KDHE). The figures revealed an overall 4.4% drop from 2014 and the lowest abortion total since 1987!

6,931 abortions were done in Kansas in 2015. KDHE reports 53% (3,579) were obtained by Kansas women and teens and 47% (3,395) obtained by non-residents. (KDHE includes an additional 43 Kansas women who obtained abortions outside Kansas for a total of 6,974.)

For the first time since KDHE abortion reporting began, an abortion was reported as done to preserve the life of the mother. The medical situation of that one abortion, as described by KDHE, was severe pre-eclampsia, with a separated placenta.

The baby was listed as 22 weeks gestation, but undersized for that age. No location for the procedure is indicated, and it may have occurred outside of an abortion clinic setting. Two other abortions past 22 weeks gestation were done on Kansas women in other states.

The 2011 Kansas Pain-Capable Unborn Child Protection Act allows an abortion at or after 22 weeks gestation (20 weeks post-fertilization) necessary to preserve the mother’s life or prevent substantial and irreversible physical impairment of a major bodily function.

“Except in the case of a medical emergency,” the law requires a written referral from another unaffiliated physician, who is “knowledgeable in the field, and knowledgeable about the case.”

WICHITA ABORTIONS DECREASE, ABORTIONIST “INACTIVE”
The good news discovered in the KDHE release was that 14% fewer abortions (down to 720 from 834) were obtained in Sedgwick County, which covers the city of Wichita. This county had been the only one in Kansas’ recent history to show any increase in abortions. After a historic low of 566 abortions in Sedgwick County in 2012, the number rose to 691 in 2013, and then increased again to 834 in 2014.

Chastine without KS medical privileges

Chastine lacks KS medical privileges

The abortion rise was attributed to heavy promotion of the 2013 opening of the SouthWind Women’s Center (in the former abortion location of George Tiller), staffed by a variety of itinerant abortionists. The medical director of that business from the outset has been Cheryl Chastine, originally from Illinois.

Chastine has been featured in pro-abortion media reports describing her frustration with providing abortions in a pro-life state. But her Kansas medical license has gone “inactive” (see here), meaning she is registered with the state Healing Arts Board through May 2016, but is not allowed to practice medicine in Kansas. Just how that is affecting abortion numbers is unclear.

Last month, Planned Parenthood of Kansas & Mid-Missouri in Wichita announced it was expanding to onsite provision of abortion pills in conjunction with abortionists from its Overland Park facility.

OTHER TRENDS
In other items of concern, there were 11 fewer abortions performed in Kansas in 2015 using the gruesome method of dismembering a well-formed, living unborn child. However, because the overall numbers dropped from 640 to 629, the proportion of this method to total abortions rose slightly from 8.8% to 9%.

The state of Kansas enacted a ban on such barbaric dismemberment abortions, but it is not in effect due to a district court ruling striking the ban. The decision is now on appeal before the state Supreme Court. (see more here)

Kansas has one of the highest proportions of chemical abortions (abortions by “medication” or pill). However, in 2015, that number dropped by 136, from 3,228 in 2014 (44.4% of all abortions) to 3,092 in 2015 (44.3% of all abortions). In 2011, Kansas enacted a ban on abortions via “webcam” without a physician present, but that law is under injunction and not yet in effect.

Abortion has a long and continued history of coercion. KDHE data has shown a 50% increase in incidents under the “Report of Physical, Mental, or Emotional Abuse or Neglect Filed” connected to abortion provision. In 2014, 29 filings were logged in under this category, rising to 43 in 2015. No explanation is given as to the resolutions of these officially-filed matters, or for the jump in reports.

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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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