Protecting Parental Rights in Medical Decision-making

SimonAndDad
Simon and his daddy, Scott

Nearly ten years ago, a little boy named Simon Dominic Crosier was born in St. Louis, Missouri. He had two adoring older brothers and overjoyed parents, but despite the love and care of his family, his immediate future was uncertain. Within three days of birth, a genetic test confirmed what Simon’s parents, Scott and Sheryl, had been fearing throughout their pregnancy. Simon was diagnosed with full Trisomy 18, also called Edwards Syndrome.

Although Trisomy 18 is often described within the medical community as “incompatible with life,” nearly 10 percent of children born with the chromosomal abnormality live longer than 12 months. Some live years, like former presidential candidate and U.S. Senator Rick Santorum’s daughter, Bella, who turns 12 this year. Some even make it to their twenties and thirties, and although they experience significant developmental delays, they live meaningful lives full of love and joy.

Simon soon began interacting with his family and his environment. He eventually graduated from taking breastmilk through a syringe to feeding from a bottle and even occasionally breastfeeding from his mom. And one thing obvious to everyone was that Simon loved the skin-on-skin time he would get with his parents while resting on their bare chests in his hospital room.

Like many babies diagnosed with Trisomy 18, Simon was born with serious heart defects. His parents decided to postpone heart surgery until after Simon gained enough strength to survive the procedure and recovery. But his heart soon started failing.

As Simon’s health declined, his parents grew increasingly concerned that he wasn’t receiving the same care as any other baby without Trisomy 18 might receive. “Each day we learned painfully that major medical interventions are routinely withheld from children like Simon,” Sheryl later reflected. “How would the statistics change if these children were treated aggressively?”

Simon breathed his last breath in his daddy’s arms just a few days shy of his three-month birthday. As the life of this little boy ended, his parents were shocked that the medical team didn’t seem to comprehensively monitor and care for Simon.

But Scott and Sheryl weren’t prepared for what they would find in the days after their child’s death. Unbeknownst to his family, Simon’s medical staff had placed a “Do Not Resuscitate” order (DNR) in his medical file.

His parents were outraged. “Care was withheld and a DNR order was placed in our son’s chart, without our knowledge or consent as Simon’s parents,” Sheryl recalled afterwards. “Ultimately, our wishes were ignored and most likely, Simon’s death was expedited.”

In the years since her son’s passing, Sheryl wrote a book, I Am Not a Syndrome: My Name is Simon, to share Simon’s story in hopes of raising awareness about the immeasurable value of children with Trisomy 18 and the unique challenges they face. She’s also waded into the policy world, turning her heartbreaking experience into advocacy for legislation known as “Simon’s Law.”

Simon’s Law requires doctors to obtain parental consent before withdrawing life-sustaining treatment or placing a “Do Not Resuscitate” order in a child’s medical record. It therefore ensures that parents’ rights are protected during critical times when they need to be focused on their child—not worrying about whether their child’s healthcare could be taken out of their hands.

Kansas, South Dakota, Arizona, and Missouri have all enacted Simon’s Laws in recent years. More progress will likely be made this year, as legislators in Idaho, Georgia, Pennsylvania, Ohio, and Michigan have already or will soon introduce Simon’s Law legislation.

Family Policy Alliance® is committed to the principle that children are intimately known and lovingly protected by their parents. That’s why parents must have ultimate decision-making authority over their child’s medical care.

For this reason, Family Policy Alliance worked with allies to pass Simon’s Law in Kansas, and we are now leading the charge for Simon’s Law in Idaho. But our support for parental rights in medical decision-making goes beyond supporting state-level Simon’s Laws. On the federal level, Family Policy Alliance had the opportunity to provide support to U.S. Senator Mike Lee (R-UT) last year while he crafted the Parental Accessibility Rights for Emergency and Negligent Treatment (PARENT) Act.

Introduced in December, the PARENT Act (S. 3138) would require hospitals receiving federal funds to inform parents of their end-of-life policies regarding minors upon request. If enacted, the law would help prevent parents like the Crosiers from being blindsided by hospitals removing life-sustaining treatment from their child without parental notice or consent.

Children are a gift from God to parents, and He has given parents the right and the duty to make medical decisions for their children, especially in times of crisis. Simon’s Law and the PARENT Act safeguard this important right, and both represent an important step toward a nation where God is honored and life is cherished.

Since it is vital that parents aren’t shut out of life-and-death medical decisions when it comes to their children, we are asking you to do two things:

  1. Use our Action Center to ask your two U.S. senators to cosponsor and support the PARENT Act (S. 3138) and other federal legislation protecting the rights of parents to make medical decisions for their children. We’ve made it easy for you—and it only takes a minute.
  2. Pray for the passage of Simon’s Laws in Idaho, Georgia, and many other states considering the legislation this year. God hears our prayers!

This post was originally written for Family Policy Alliance.


 

UK Doctors and Judges Sentence Another Innocent Baby Boy to Death


Update (6:00PM EST, 04/23/2018): Despite ongoing efforts by Italian and Vatican diplomats to secure Alfie’s release, the hospital has removed the boy’s ventilator, and his hospital room has been surrounded by police officers. The English judge appears obstinately committed to his decision that Alfie’s life is not worth living, notwithstanding video published by LifeSiteNews earlier today showing that the toddler is “lively and alert.”


Update (2:00PM EST, 04/23/2018): Alfie has been granted Italian citizenship in hopes that English authorities will release him for treatment at a hospital in Rome with ties to the Vatican. His doctors, resolute in their efforts to prevent the boy from receiving treatment elsewhere, planned to remove him from his ventilator today. The big question right now is whether the English are as determined to murder Italian citizens as they are to murder their own?


29789950_2042672899282211_9078872337536778240_nI am angry and upset that, for the second time in less than a year, the English legal and medical systems are conspiring to condemn a sick baby boy to death against the instructions of his parents.

Alfie Evans, who is now 23 months old, was taken to an English hospital in December 2016 to be treated for a lung infection. Some time later, he slipped into a coma. Doctors have been unable to diagnose Alfie’s malady, although they assume he has a mitochondrial disorder.

In February, the High Court in London agreed with doctors that the boy should be removed from life support, and the UK Supreme Court upheld the lower court’s decision. “Alfie’s brain had been so corrupted by mitochondrial disease that his life was futile,” the judge wrote in the decision. Alfie’s parents, on the other hand, want to take Alfie to an Italian hospital with ties to the Vatican for treatment.

Whether Alfie will be given the opportunity to receive treatment in Italy is still to be seen. The inappropriately named European Court of Human Rights rejected the family’s request to seek treatment elsewhere, and the hospital plans to remove life support today.

Screen Shot 2017-06-12 at 9.20.28 PMThe ongoing case brings to mind Charlie Gard, who was murdered under similar circumstances by doctors and judges last summer. Gard’s parents brought him to a London hospital in October 2016 for breathing problems when he was three months old. Gard was subsequently diagnosed with a mitochondrial disorder. In January 2017, he had seizures and fell into a coma. Claiming that the seizures had caused irreversible brain damage, Charlie’s doctors petitioned an English judge to grant them the ability to end his life, despite the ongoing discussions between his parents and an American doctor who was willing to administer an experimental treatment that might have saved Charlie’s life. Hospital officials prevailed in court (just like with Alfie, the European Court of Human Rights refused to hear Charlie’s case) and removed Charlie from life support last July.

Justice Francis, the High Court judge who heard Charlie’s case, ruled that “it is in Charlie’s best interests” for the hospital “to permit Charlie to die with dignity.” In his ruling, Justice Francis rejected the objections of those who ask why courts should make these decisions and override the rights of parents:

“The duty with which I am now charged is to decide, according to well laid down legal principles, what is in Charlie’s best interests. Some people may ask why the court has any function in this process; why can the parents not make this decision on their own? The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.”

It is morally reprehensible for a judge to claim the power to decide whose lives are worth living and whose lives are not. Furthermore, it can only be described as a blatant infringement on parental rights when doctors and judges attempt to override decisions by parents regarding medical treatment for their children.

For the historically literate, Alfie and Charlie’s cases conjure up images of Nazi Germany, where doctors routinely euthanized the “unfit,” whose lives, in the eyes of politicians and doctors, weren’t “worth” living.

Lest we forget, physicians take an oath to “do no harm.” Although doctors shouldn’t be forced to provide care with which they personally or professionally disagree, they have no right to prevent parents from taking their children to another medical provider for treatment that may potentially prolong or improve the quality of life.

While the doctors involved in these two cases clearly overstepped their professional prerogative, they could not implement their murderous schemes without the legal support provided by English law and judges. Any government that presumes it has the power of life and death over its innocent citizens is tyrannical and monstrous. Any government that violates the natural right of parents to make medical decisions for their children is illegitimate, acting without authority, and flaunting the natural order, God’s law, and His design for human society.

Pray for little Alfie and his parents, both of whom are in their early twenties. Pray for the English authorities to repent and change direction. And pray that the American people will wake up and recover the conviction that life is sacred, lest our nation follow in England’s footsteps.

Why We Must Keep Fighting for Life

3DE361EE00000578-4644268-The_10_month_old_boy_also_has_brain_damage-a-46_1498586584367Western society has truly become a “culture of death.” Three recent news stories illustrate this unfortunate development:

1. Charlie Gard is a ten-month-old with a rare genetic disorder that has put him in a coma. An American doctor offered the family a potentially life-saving experimental treatment for Charlie, and the family soon raised over $1.6 million to cover the expenses.

Charlie’s story took a turn for the worse when his London hospital refused to permit his parents to take him across the Atlantic for treatment. His doctors believed that since he would likely be disabled if the treatment were successful, “it is in Charlie’s best interests to permit Charlie to die with dignity,” a sentiment echoed by a British judge after Charlie’s parents sued.

According to the judge, “Although the parents have parental responsibility [in making medical decisions for their children], overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.”

Charlie’s parents fought valiantly for the right to secure potentially life-saving treatment for their child, appealing the decision to the Supreme Court and the European Court of Human Rights. Justice was denied, however, when the ECHR refused to intervene earlier this week, allowing doctors to end Charlie’s life.

2. The parents of an Iowa boy (“Z.P.”) born with cerebral palsy successfully sued their doctor for failing to inform them that their baby would be born with the disability. They say they would have had their baby aborted if they had known about the disability.

Iowa’s Supreme Court ruled in favor of the parents. As James Silberman accurately notes, “If the right to kill unborn children exists, it follows that a doctor’s failure to inform the parents of an unborn child about the presence of an undesirable trait would indeed be a violation of that right.”

3. The Oregon Senate passed a bill (SB494) earlier this month that would have allowed nursing homes to starve disabled patients to death. The bill was introduced after Bill Harris sued the nursing home caring for his wife, Nora, who suffers from dementia. Harris wanted the nursing home to stop spoon feeding Nora.

Although Nora is dealing with advanced Alzheimer’s, she is still conscious and wants to eat. SB494 would have allowed the nursing home to withhold food and water from Nora until she starved to death.

Thankfully, the legislation recently failed in the House Judiciary Committee. Although the mere fact that the bill passed the Senate is remarkable and frightening, it is unsurprising, considering that Oregon was the first state to allow doctors to kill terminally ill patients who want to die.

Why We Must Keep Fighting

Human life is sacred. Every person, regardless of his or her disabilities or circumstances, has dignity and is inherently valuable.

Human life is beautiful. Anyone who has met the inspiring and beautiful people living with disabilities knows this to be true.

Those with disabilities offer so much to the world; most importantly, they provide the opportunity for society to grow in its compassion for the weak and vulnerable.

Those who have disabilities are no less human than you or me. Their humanity demands the same natural rights we all share, the most important of which is the right to live.

We have not been given the authority to decide whose lives are “worth living.” Abortion, euthanasia, and suicide are so destructive because these things demean human life.

Our shared humanity enjoins us to fight against these evils. We must defend the defenseless. We must speak for Charlie, Nora, and “Z.P.” We must not permit judges and legislators to change and manipulate our laws to allow for the murder of the innocent.

Who will defend the most vulnerable if we do not? I pray that we may never forget that their lives are immeasurably valuable, and I pray that more good people rise up to restrain the evil that has convinced far too many people that some lives are more valuable than others.

Tu ne cede malis, sed contra audentior ito (Latin: Do not give in to evil but proceed ever more boldly against it).


This article was originally written for the Family Policy Institute of Washington.


 

When Doctors and Judges Turn Murderous

Screen Shot 2017-06-12 at 9.20.28 PMDoctors and judges in Great Britain may kill an innocent baby boy today.

Charlie Gard is ten months old. Like many baby boys, he likes holding his stuffed animal monkey.

Sadly, Charlie has mitochondrial disease, an extremely rare genetic disorder affecting the part of cells that create the energy needed for life. Although Charlie has been on life support for months, a doctor in the United States has offered the family an experimental treatment that might save his life. Tens of thousands of people have donated $1.6 million to pay for the treatment.

Despite the possibility of successful treatment across the Atlantic, Charlie’s doctors at Great Ormond Street Hospital in London refused to let his parents take him to America for treatment. Specialists then petitioned a British Court for permission to end his life, despite pleas from the his parents to keep him alive.

Justice Francis, the High Court judge who heard Charlie’s case, ruled that “it is in Charlie’s best interests” for the hospital “to permit Charlie to die with dignity.” In his ruling, Justice Francis rejected the objections of those who ask why courts should make these decisions and override the rights of parents:

“The duty with which I am now charged is to decide, according to well laid down legal principles, what is in Charlie’s best interests. Some people may ask why the court has any function in this process; why can the parents not make this decision on their own? The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.”

According to Connie Yates, Charlie’s mother, the American doctor says there is no reason why the treatment wouldn’t work for her baby boy. Yet the British doctors and judges steadfastly refuse to budge.

Connie posts regular updates on her Facebook page. Her timeline is filled with pictures of her holding her son, alongside captions like “We won’t give up on you baby boy” and “If he’s still fighting, we’re still fighting.”

Throughout the ordeal, her social media posts have kept a positive tone. At times, though, her vexation seeps into her posts. “We have had the money for over 2 months but we are NOT allowed to take OUR OWN SON to a hospital that want to try and save his life!” Connie wrote last week.

“Why can’t we be trusted as parents?? I would never sit by my Sons side and watch him suffer, I’m not like that! Why can’t the drs in America be trusted either?? Why why why can’t we try and save our Sons life??”

Connie and Chris (Charlie’s dad) are heroes. When doctors told them their son’s life wasn’t worth saving, they kept fighting. When a judge unilaterally decided it’s better to kill the baby than to allow them to seek treatment elsewhere, they kept fighting.

The Telegraph, an English newspaper, even published an insensitively written editorial by a mother who had lost a son. Her advice to Charlie’s young parents? “Sometimes in life things just don’t go as you want them to… Sometimes you have to let go.”

But these heroes keep fighting. They know the immeasurable value of their baby boy’s life.

On the other hand, the doctors and judges involved in Charlie’s case are nothing less than murderers, perversely justifying their senseless slaughter with the fallacious claim that their murderous act will be merciful and in the best interest of their victim.

What about the parents? Don’t their wishes and beliefs count for something? Are they not ultimately responsible for their child?

We cannot stand silent as this innocent baby boy is murdered by the government that is supposed to protect him and the doctors who swore an oath to “do no harm.” This is the fruit of the culture of death. This is the fruit of the “death with dignity” movement. We have devalued life to the point that doctors and judges think they can decide whose lives are worth living.

Yesterday, Charlie’s parents were able to enjoy their first picnic with him. “Charlie was awake the whole time. It was wonderful for him to feel the sun on his face and the wind in his hair,” Connie said. “We put on some music and Chris and I lay down next to Charlie. For the first time in months we felt like a normal family.”

Charlie’s fate now rests in the hands of the European Court of Human Rights. It will likely decide today whether Charlie’s life is “worth living.”

No matter how the Court decides, we cannot give up fighting for the most vulnerable. We must keep defending life.


Update (06/14/2017): The European Court of Human Rights will allow Charlie Gard to be kept on life support while they consider the case.


This article was originally written for the Family Policy Institute of Washington.


 

New York’s War on Parents

NYAmericans have traditionally understood that parents, not the state, have been delegated the responsibility to raise their children. But government officials in the Big Apple state are not afraid of running roughshod over parental rights, especially when it comes to a parent’s decisions about their children’s education.

Last week, the story of Kiarre Harris gained national attention. Harris, a single mother, felt her two children weren’t experiencing success in the Buffalo Public Schools they attended. Like many parents concerned about their children’s education, she decided to exercise her right to homeschool.

Harris filed paperwork to unenroll her children from public school, complying with the notoriously burdensome rules governing homeschooling families in New York. Working with a homeschool coordinator, Harris successfully completed the process on December 7, 2016.

A week after obtaining confirmation that she had successfully withdrawn her kids from public school, Harris received a phone call from a Child Protective Services representative, demanding to know why her children had been absent from school. She informed the CPS official that her children were now being homeschooled and offered to furnish copies of the paperwork that had been filed with the school district.

Harris thought the issue had been resolved – that is, until one month later, when CPS officials and police came to her home with a court order to remove her children, accusing her of “educational neglect.” When she refused to comply, police arrested her for obstruction. She was jailed and has been unable to see her children, who are now in foster care, for weeks.

Harris blames Buffalo Public Schools for not properly processing the paperwork unenrolling her children.

Buffalo Public Schools denies Harris’ claim. The district alleges that Harris had an encounter with CPS before making the decision to homeschool her kids. Their statement also implies that Harris did not have full custody of her kids, which is a requirement for parents making the decision to homeschool, but Harris contends that she does in fact have full legal custody.

“As we learn more, we realize [what has happened to Harris and her children] is happening a lot more than we realized,” said Samuel L. Radford, president of the District Parents Coordinating Council.

Unfortunately, Radford’s analysis seems to be right. According to the Home School Legal Defense Association, New York has earned a reputation for “their systematic mistreatment of homeschooling families.”

HSLDA is a non-profit advocacy organization that provides homeschooling families with legal services. It is suing New York City on behalf of Tanya Acevedo, a homeschooling mom. Like Harris, Acevedo was accused of “educational neglect” and was subjected to an invasive CPS investigation after New York City failed to properly process her paperwork withdrawing her son from his public school.

Jim Mason, HSLDA’s Vice President of Litigation, worked with Tanya as she battled CPS and New York City to exercise her right to homeschool her child. He published the following statement on December 5, 2016:

“After Tanya [Acevedo’s] situation was resolved, I asked other NYC homeschooling families for their stories. What I found appalled me.

“Family after family have found themselves in legal limbo because [New York City’s Central Office of Homeschooling] simply cannot or will not follow the timelines in the regulation. More than one homeschooling family told me they had been turned over to CPS because of the office’s delayed handling of the homeschooling paperwork.

“The injustice against homeschooling families in New York City can no longer be tolerated. On December 5, HSLDA filed a civil rights lawsuit against New York City public schools over their systematic mistreatment of homeschooling families. We are asking for money damages and for a court to order the New York City bureaucracy to simply follow New York’s homeschooling regulation.”

Harris and Acevedo’s regrettable experiences shed light on the difficulties homeschooling families face. Despite the Supreme Court’s recognition that parents have a fundamental right to “establish a home and bring up children” (Meyer v. Nebraska, 1923), some elitist bureaucrats feel they can make better decisions than parents about what is best for children .

The family is society’s first and most important institution, and the parent-child relationship is sacrosanct. Parents are ultimately responsible for the education and well-being of their children. As long as parents comply with reasonable expectations, government shouldn’t interfere with this sacred relationship unless the child’s health or safety is at risk.

At present, Harris’ kids are still in foster care. New York officials should wise up, realize they aren’t the parents, and stop violating the rights of those who are.


This article was originally written for Family Policy Institute of Washington.

A Teacher’s Perspective on Betsy DeVos and School Choice

220px-school-education-learning-1750587-hThe liberal media pounced on Betsy DeVos after her confirmation hearing last week, alleging that Trump’s nominee for Secretary of Education is a radical Christian who supports “dismantling” public schools.

I teach at one of those private, for-profit, Christian schools that Democrats and their allies in the media are vilifying as one of the greatest threats to our nation’s youth and education system.

Although those opposed to DeVos’ nomination would like to convince you that private and charter schools are designed to serve only affluent whites, in reality, my school’s student body is majority-minority. Many of these kids come from broken homes on the lower end of the socioeconomic spectrum.

This isn’t as rare as the media would lead you to believe. Scholarships and voucher systems, whether privately or publicly funded, allow children to succeed in schools their families would otherwise have been unable to afford. In fact, empirical evidence overwhelmingly indicates that voucher programs improve racial integration in schools.

Many of my students were unable to achieve their full potential in their neighborhood public schools. Their parents were growing frustrated with what their children’s schools were teaching and were growing worried about the culture of drugs, promiscuity, and insubordination.

In my experience, low-income and minority families who are given the opportunity to attend schools like the one where I teach are so thankful their kids are able to receive a quality education in a safe and edifying environment.

Some of my students have shared with me their experiences attending local public schools. One of my black students carried a gun with him to school as an early teenager to keep himself safe from gang activity. Drug dogs sweep the halls of local public high schools, which also sometimes use metal detectors to check students for weapons.

Apart from concerns about their children’s safety, many families also feel uneasy about the content of their children’s education. In Washington State, for example, schools are now teaching elementary school children that they can choose their gender. Sexual education curricula teach students to use methods of birth control many parents find morally objectionable. And some teachers, schools, and educational standards distort history and science to promote their pet political agendas.

Many of the most vocal critics of DeVos and the educational philosophy she represents contend that the very existence of private schools with different educational philosophies threatens public schools and our social order. These critics oppose any system of school choice that allows parents to choose the school they want to educate their children.

Contrary to the baseless claims of her critics, Betsy DeVos has never supported “dismantling” the public school system. Instead, she is simply working to ensure that those low- and middle-income families who find their local public schools inadequate can have the same opportunities as wealthier families.

Providing more alternatives to public schools wouldn’t necessarily cause an exodus of children from public to private schools, nor would it require that public schools be “dismantled.”

If, in fact, most public schools offer an education superior to that of comparable private schools, families will decide to leave their kids in the public school to which they’ve been assigned. On the other hand, families who worry about their son or daughter attending public school would be able to move him or her to a school that better meets their needs and reflects their values.

No school or educational philosophy is perfect, and a one-size-fits-all system doesn’t really fit all families and students. That’s why choice is so necessary and important.

I’m especially thankful schools like mine exist to provide families an alternative to unsafe, failing schools that teach an educational philosophy antithetical to traditional Judeo-Christian values. Voucher programs like those supported by Betsy DeVos enable families to pursue whatever means of education works best for their children – and that’s something we should all celebrate.


This op-ed was originally written for the Family Policy Institute of Washington.