Thursday, June 16, 2016

Simon's law

A bill proposed in the Missouri House would prohibit health care facilities and others from withholding life-sustaining procedures from a minor patient without the written consent of a parent or legal guardian.

Sponsored by Rep. Bill Kidd, R-Kansas City, HB 113 also would require health care facilities, nursing homes and physicians to disclose in writing any policies that relate to a patient's care, including life-sustaining or non-beneficial treatments.

The bill is nicknamed "Simon's Law" after Simon Crosier, who was born in 2010 with Trisomy 18, a genetic disorder that includes an extra chromosome 18. Simon lived three months.

His mother, Sheryl Crosier, a member of Annunciation Parish in Webster Groves, wrote a book in 2012, called "I am Not a Syndrome -- My Name is Simon." In the early stages of her research, Crosier was going through Simon's medical records and discovered that doctors had placed a "do not resuscitate" order in her son's records without her knowledge, she said. He also was ordered to receive nutrition as a comfort measure only. Turns out, the hospital had in place a futility policy, which allows physicians to withdraw medical treatments deemed to be "futile."

"They took the road they wanted to go," said Sheryl Crosier. "They started taking away, stripping him of everything. They would say, things like 'not for Simon,' or 'incompatible with life.' It was very dehumanizing."

In 2013, the Crosiers met with a film producer who was working on a documentary on families with children who have special needs. The Crosiers discovered they were not alone. Several others families shared stories of not being informed whether the hospital had a futility policy and what rights they had as parents in making decisions for their children.

Last fall, Crosier shared her story at a Missouri Right to Life event in Kansas City. There, she met Kidd, who was moved by her story.

"This should not even occur," said Kidd. "Removing life-sustaining treatment (without permission) is punishable by law, but it's being done and off the books, from my understanding. Morally and ethically they should inform the parents and that's not always happening. This is about parental rights. If treatment is going to be withheld, then the parents have to have it in writing."


  1. On December 3, Simon’s oxygen saturation levels began to fall. We were told this is the end, nothing could be done. Simon drew his last breaths, I asked again what could be done and I was told “nothing.” At 10:45am December 3, 2010 the tears poured from our eyes and others around us as Simon left this world for his eternal home.

    Imagine watching your child take their last breaths, his oxygen saturation levels plummet and the medical professionals do nothing.

    Later, we found out there was a Do Not Resuscitate (DNR) in his medical file which explains why the medical professionals stood around and did nothing.

    If Simon was a healthy 3 month old it would have been an ER moment with people running to save my child. But because he was a child with chromosomal abnormalities, no one in the NICU did a thing.

    Later we found out that the only food Simon received through his tube was comfort feeds. When Simon fussed, the medical team gave him drops of sucrose, otherwise known as sugar water. If Simon hadn’t stopped breathing, he might have starved to death.

    Because Simon’s diagnosis had a “label” on it, he wasn’t treated for his conditions and medical treatment was withheld. I longed to tell Simon’s story of hope, faith and love so I wrote Simon’s book. I believe my son provided the title I Am Not a Syndrome-My Name Is Simon. Our children are not a labels and are not defects. No person is disposable. Every person has a name and an identity.

    Many children are being denied medical care and treatment. Comfort care may be the only option given to parents. Often, babies are given only drops of sugar water-sucrose or nothing at all.

    Many times, a Do Not Resuscitate (DNR) is put in the child’s medical charts without the parent’s consent and many children will die. Only after their child has passed away do parents like us discover a DNR was placed in their child’s file or verbally issued by the Doctor in charge.

    If a child has apnea, many times they too are not afforded assistance and die. Too often, medication given by medical professionals is purposely overdosed causing the child to die.

    After my son, Simon’s, death, I discovered that many hospitals and medical facilities have futility policies. This means that any doctor can verbally issue a Do Not Resuscitate order or place one in your child’s medical chart without parental permission or consultation. It doesn’t matter if they are one day old or 17 years old. As long as they are a minor, an attending physician may determine the value of your loved one.

    Simon will continue to change hearts and I will continue to increase awareness of patient discrimination and empower parents to make sure their children are getting care.

  2. Kansas Senate Bill No. 437, popularly known as “Simon’s Law,” was recently amended in committee and subsequently passed by the Kansas state Senate. The bill, which most notably requires written parental consent for a Do Not Resuscitate (DNR) order to be added to a minor patient’s medical chart, passed the Kansas Senate with next to no opposition in a final vote that tallied thirty-seven to three. But the nearly unanimous vote doesn’t tell the full story of Simon’s Law. As an inherently pro-life, pro-parental rights bill, parts of the legislation are considered highly controversial. Minor patients, their parents, healthcare providers, and medical institutions disagree over whether the bill is needed and what its impact will be if it becomes law.

    Soon, the Kansas House will consider the bill—the next step toward Simon’s Law becoming Kansas state law. The bill is also being pushed in Missouri (H.B. 1915), after a previous version of the bill (H.B. 113) failed in 2015. But despite the initial setbacks in Missouri, the result of the recent Kansas Senate vote has encouraged pro-life and pro-parental rights advocates, who have been the greatest driving force for passage of the bill.

    The impetus for the bill came from the death of an infant, Simon Crosier, who was born in 2010 in St. Louis, Missouri, with the chromosomal disorder Trisomy 18. Simon was born alive via C-section, and lived for three months with many complications, including a severe heart defect. After his death, Simon’s mother discovered that a DNR order had been written into Simon’s chart. This order had been placed there by Simon’s medical providers without the Crosiers’ knowledge or consent. Simon’s parents were also shocked to discover that only “comfort feeds” had been authorized for their son, despite their hopes that Simon would grow large enough to be considered for heart surgery.

    The Crosiers believe these unilateral decisions were a significant violation of their parental authority, or “autonomy,” in the language of bioethics. Ignorant of the DNR order at the time, they describe feeling helpless and confused at the lack of medical intervention while Simon’s oxygen saturation levels dropped on the day of his death, a mere three days before his scheduled consultation for heart surgery. The Crosiers’ heartbreaking story initially attracted the attention of state lawmakers in Missouri and Kansas, and should continue to spur the push for versions of Simon’s Law across the nation.

  3. Like fellow Public Discourse author Grattan Brown, I would suggest a definition like the one recommended by the American Thoracic Society, which advises that “The term ‘futile’ should only be used in the rare circumstance that an intervention simply cannot accomplish the intended physiologic goal.” As Brown points out, too often, care is deemed “futile” when it may still bring about some benefit to the patient. This imprecise use of the term can breed the irresolvable conflicts seen in situations like baby Simon’s.

    There is a clear difference between the futility of a treatment, and the “futility” of someone’s life. Unfortunately, contemporary bioethics often conflates the two. A treatment may be truly futile in the sense that it will not accomplish the intended physiological goal for the patient, rendering it unnecessary (and possibly unethical) to perform. This is an objective evaluation, and no medical professional should be required to provide such treatment; the amended language in Simon’s Law implicitly reiterates that. But too often, providers use the term “futile” in describing someone’s quality of life. To say that an individual’s life is “futile” because it may appear short, difficult, or full of pain, introduces a subjective value judgment that no one but the patient herself (or her surrogate in the case of incompetence) may appropriately or ethically determine. Healthcare professionals should examine their beliefs about “futility,” and take care only to use the term in its objective, medical context, which the amended language in Simon’s Law now encourages.

  4. Missouri Rep. Bill E. Kidd, R-20th District, is sponsoring the bill. At a rally to support the bill in Rolla on April 19 at the Phelps County Courthouse, Kidd told the crowd, “The medical community is now deciding for you that the life of your child is futile.”

    To me, this seems like a no-brainer to pass a bill like this that would allow parents or guardians to be notified before any "do-not-resuscitate" or other life-sustaining order is issued by a physician to a minor.

    Patients and their families need to be informed of what is occurring in these situations, and often small children, especially infants, are not aware of the repercussions of a doctor’s order.
    Many minors lack the type of decision-making capacity needed in these situations.

    We put a lot of trust and faith in our doctors. Yes, they went to medical while most of us don’t have that same training. So I can definitely respect their opinions on what they feel needs to be done.

    However, a parent with a child who suffers critical injuries in a bicycle crash or a teenager who is involved in a serious car accident should be in the know.

    Sometimes in an emergency situation, your regular physician may not be available right away. You may be dealing with unknown medical professionals.