Great News-Utah is Twelfth State to Pass Simon’s Law!

For several years, Sheryl Crozier and I worked to get a law passed in Missouri protecting our children with disabilities from medical discrimination such as DNR (do not resuscitate) orders, withholding of basic treatment, etc. without our knowledge or consent. (See my 2016 blog “My testimony for Simon’s Law”).

That law was finally passed in Missouri in 2019 and in February 2024, Simon’s Law was introduced in Congress.

The push for states to adopt a Simon’s Law has continued and Simon’s Law has now passed in 12 states.

Here is Sheryl’s post on the latest Utah law:

“FOR IMMEDIATE RELEASE: April 25, 2024

Sheryl Crosier

Simon’s Law

(314) 443-3770

Sheryl@SimonsLaw.org

HB-0200 Passes Utah Legislature

“Designating a Child as DNR Without Parental Consent” is Unprofessional Conduct

Salt Lake City, UT: Simon’s Law today announced the passage of HB-0200, concerning life-sustaining procedures, which is scheduled to go into effect on May 1st.  The new amendment modifies Titles 58 and 75, providing much needed parental rights protection during the process of life-sustaining medical treatment decisions concerning a minor.

Scott and Sheryl Crosier founded the non-profit after the death of their son, Simon, when they discovered a Do-Not-Resuscitate (DNR) order was placed in his medical chart without their knowledge or consent.

“No child’s medical chart should have a DNR order or the withholding of life-sustaining treatment without parental knowledge or consent,” said Simon’s Law CEO and co-founder, Sheryl Crosier.  The Crosiers soon discovered a growing trend in hidden DNR orders without parental awareness or permission and felt the call to make a difference.

The new Utah amendment protects parents’ rights to have the final say in their child’s medical treatment, and is presently the 12th state to either pass a version of Simon’s Law, or be identified as already having similar legislation on the books.

“I can’t bring my son, Simon, back,” said Crosier, “but I want to make sure that no parent or guardian of a minor child is stripped of their parental rights in the determination of their child’s life or death.”

Features and benefits of HB-0200 include:

  • Makes designating a child as do not resuscitate without parental consent unprofessional conduct for physicians, advance practice registered nurses, and physicians assistants.
    §58-31b-502(1)(s), 58-67-502(1)(h), 58-68-502(1)(h), 58-70a-503(1)(h)
  • Makes technical and conforming changes related to orders for life sustaining treatment.
    §75-2a-103(17), §75-2a-106(3)(b)(iii), §75-2a-106(4), §75-2a-106(8)
  • Protects parental rights to have the final say in do not resuscitate orders and orders for life sustaining treatment for their minor child. (Emphasis added)

For more information on HB-0200, visit https://simonslaw.org/state-by-state/.  

About Simon’s Law: We are a national network of families and professionals influencing legislation to preserve parental rights in Do Not Resuscitate (DNR) determinations.  In addition to influencing or identifying such legislation across the nation, we have also introduced The Simon Crosier Act (HR-6344) in Congress to amend titles XVIII and XIX of the Social Security Act pertaining to the Medicare and Medicaid codes regarding DNRs on unemancipated minors.”

CONCLUSION

While it is wonderful that this protective law has been passed, there is a larger question to be asked: Shouldn’t these protections for children and their families have already been part of medical and nursing ethics education?

I remember when it used to be!

Great News: Simon’s Law Introduced in Congress

Sheryl Crosier, the mother of Simon, a baby with Trisomy 18, and I, with my baby Karen who had Down’s Syndrome and a severe heart defect, worked for years to get a law passed In Missouri to get our children protected from the lethal medical discrimination against children with disabilities we encountered (See my 2016 blog My testimony for Simon’s Law” )

Sheryl worked hard to get other states to do the same and in 2020, I wrote a blog titled “Strongest “Simon’s Law” Yet is Passed in Iowa” .

Now, Sheryl and Allies of Simon’s Law have had HR-6344 (The Simon Crosier Act) introduced into Congress.

Nancy V.

Legislative Action Alert for Congressional HR-6344 (The Simon Crosier Act) – All Star Press.com

Legislative Action Alert for Congressional HR-6344 (The Simon Crosier Act)

 RNILSEN12  FEBRUARY 9, 2024 3 MIN READ 

The Board of Directors of Simon’s Law, a nationwide network of families, guardians, and professionals dedicated to creating national awareness and protection for medically endangered pediatric dependents with life-threatening diagnosis through education, accountability, parental rights legislation, and Patients’ Bill of Rights, calls on all citizens to petition their congressmen to support The Simon Crosier Act.

HR-6344 (The Simon Crosier Act) proposes to amend titles XVII and XIX of the Social Security Act to require providers of services and health maintenance organizations under the Medicare and Medicaid programs to provide for certain policies to be in place relating to do-not-resuscitate orders or similar physician’s orders for unemancipated minors receiving services.

The Simon Crosier Act (HR-6344) is currently waiting for the House Committee On Energy and Commerce to mark it up. Please take a moment to reach out to committee members, especially Chairwoman Rodgers (R-Washington) at (202) 225-2006, with the following message:

My name is your name, I am the parent of a child with a life-limiting diagnosis, who is at risk of having resuscitative measures withheld without my consent, with every hospitalization in your state. Therefore, I urge you to mark up HR-6344 (The Simon Crosier Act), so that it has the opportunity to move beyond the House Committee On Energy and Commerce to protect my parental right to be included in DNR determinations for my child.

REPUBLICAN:

1.     Cathay McMorris Rodgers, WA (202) 225-2006

2.     Michael C. Burgess, TX (202) 225-7772

3.     Robert E. Latta, OH (202) 225-6405

4.     Brett Guthrie, KY (202) 225-3501

5.     H. Morgan Griffith, VA (202) 225-3861

6.     Gus M. Bilirakis, FL (202) 225-5755

7.     Larry Bushon, IN (202) 225-4636

8.     Richard Hudson, NC (202) 225-3715

9.     Tim Walberg, MI (202) 225-6276

10.              Earl L. “Buddy” Carter, GA (202) 225-5831

11.              Jeff Duncan, SC (202) 225-5301

12.              Gary J. Palmer, AL (202) 225-4921

13.              Neal P. Dunn, FL (202) 225-5235

14.              John R. Curtis, UT (202) 225-7751

15.              Debbie Lesko, AZ (202) 225-4576

16.              Greg Pence, IN (202) 225-3021

17.              Dan Crenshaw, TX (202) 225-6565

18.              John Joyce, PA (202) 225-2431

19.              Kelly Armstong, ND (202) 225-2611

20.              Randy K. Weber, Sr., TX (202) 225-2831

21.              Rick W. Allen, GA (202) 225-2823

22.              Troy Balderson, OH (202) 225-5355

23.              Russ Fulcher, ID (202) 225-6611

24.              August Pfluger, TX (202) 225-3605

25.              Diana Harshbarger, TN (202) 225-6356

26.              Mariannette Miller-Meeks, IA (202) 225-6576

27.              Kat Cammack, FL (202) 225-5744

28.              Jay Obernolte, CA (202) 225-5861

DEMOCRAT:

1.     Frank Pallone, Jr., NJ (202) 225-4671

2.     Anna G. Eshoo, CA (202) 225-8104

3.     Diana DeGette, CO (202) 225-4431

4.     Janice D. Schakowsky, IL (202) 225-2111

5.     Doris O. Matsui, CA (202) 225-7163

6.     Kathy Castor, FL (202) 225-3376

7.     John P. Sarbanes, MD (202) 225-4016

8.     Paul Tonko, NY (202) 225-5076

9.     Yvette D. Clarke, NY (202) 225-6231

10.              Tony Cárdenas, CA (202) 225-6131

11.              Raul Ruiz, CA (202) 225-5330

12.              Scott H. Peters, CA (202) 225-0508

13.              Debbie Dingell, MI (202) 225-4071

14.              Marc A. Veasey, TX (202) 225-9897

15.              Ann M. Kuster, NH (202) 225-5206

16.              Robin L. Kelly, IL (202) 225-0773

17.              Nanette Diaz Barragán, CA (202) 225-8220

18.              Lisa Blunt Rochester, DE (202) 225-4165

19.              Darren Soto, FL (202) 225-9889

20.              Angie Crian, MN (202) 225-2271

21.              Kim Schrier, WA (202) 225-7761

22.              Lori Trahan, MA (202) 225-3411

23.              Lizzie Fletcher, TX (202) 225-2571

The contact list of politicians and their office contacts is available from the public Congress website for the Committee On Energy and Commerce.

For further information or media inquiries, please contact:
Sheryl Crosier – Mother of Simon, Founder of Simon’s Law – Sheryl@SimonsLaw.org
Sand Enzminger – Director of Operations, Simon’s Kids – Sandi@SimonsLaw.org
Website: www.SimonsLaw.org

Read about Simon’s Life and His Impact

Are Near-Death Experiences Real?

In a November 4, 2022 Medscape article titled “‘Lucid Dying’: EEG Backs Near-Death Experience During CPR”, researchers found brain wave recordings taken during in hospital cardiac arrest resuscitation (cardiopulmonary resuscitation) lends support to near-death experiences reported by some people who survived cardiac arrest.

In the Medscape article and according to lead investigator Sam Parnia, MD, PhD:

“These recalled experiences and brain wave changes may be the first signs of the so-called ‘near-death’ experience, and we have captured them for the first time in a large study,” lead investigator Sam Parnia, MD, PhD, with NYU Langone Health, says in a news release.

Identifying measurable electrical signs of lucid and heightened brain activity during CPR, coupled with stories of recalled near-death experiences, suggests that the human sense of self and consciousness, much like other biological body functions, may not stop completely around the time of death, Parnia adds.” (Emphasis added)”

According to the article, the researchers used “audiovisual testing of awareness with continuous real-time EEG and cerebral oxygenation monitoring” during the resuscitation.

While only 53 of the 567 patients survived (9.3%), 28 survivors completed interviews with 11 reporting “unique, lucid experiences during resuscitation.”

According to Dr. Parnia:

“Our understanding of death has gone through a seismic shift in the last few years,” and

“The biological discoveries around death and the postmortem period are completely different to the social conventions that we have about death. That is, we perceive of death as being the end, but actually what we’re finding is that brain cells don’t die immediately. They die very slowly over many hours of time,” Parnia noted. (Emphasis added)

Dr. Parnia presented the findings November 6 at a resuscitation science symposium at the American Heart Association (AHA) Scientific Sessions 2022 in Chicago.

The Medscape article also noted that not everyone agrees:

“Ajmal Zemmar, MD, PhD, with University of Louisville, Louisville, Kentucky, noted that several studies, including this one, “challenge the traditional way that we think of death — that when the heart stops beating that’s when we die.”

The observation that during cardiac arrest and CPR, the brain waves are still normal for up to an hour is “fairly remarkable,” Zemmar told theheart.org | Medscape Cardiology.

“However, whether there is conscious perception or not is very hard to answer,” Zemmar cautioned. 

“This type of research tries to bridge the objective EEG recordings with the subjective description you get from the patient, but it’s hard to know when conscious perception stops,” he said.”

WHAT DOES THIS ALL MEAN?

Over the decades, there have been many studies of near-death experiences and an October 31,2022 Medscape article by a nurse practitioner who describes how both negative and positive near-death experiences can impact an individual.

There is even a 2020 Frontiers in Neurology article The Neurology of Death and the Dying Brain: A Pictorial Essay” that explores some of the potential effects of issues like near-death experiences on the clinical determinations of death and organ donation.

But whether or not you believe in near-death experiences, there is one crucial lesson here: We must always treat any ill person-awake or presumed unconscious-with the respect due any person when we talk to and care for them.

I have often told the story of “Mike”, a young man catastrophically injured in a car crash whose doctor said the if he survived, he would be a “vegetable”. We nurses talked to Mike and eventually he started to respond to us but not the doctor.

Mike was shipped off to a nursing home but almost two year later, he returned to thank us and told us he was getting married. When we laughed and told him how he started to respond to us but not the doctor, Mike became very serious and said he would not respond to the doctor because he heard the doctor call him a “vegetable”!

CONCLUSION

But my favorite story is about working on a medical floor caring for an elderly gentleman who was dying and showed no awareness of his 4 adult sons sitting at his bedside.

I encouraged his sons to talk to him, but they said they didn’t know what to say and didn’t think he could hear anyway.

I took the man’s hand and noticed that it was strong and callused like a man who worked with his hands.

I asked the sons was their dad did and they all started relating stories about his love of farming and then told funny stories about how their dad reacted to their antics growing up.

Pretty soon, all the sons were laughing and telling their dad how much they appreciated him as I quietly left at the end of my shift.

When I returned the next day for my next shift, I was not surprised to learn that the dad had peacefully died during the night with his sons at his side. But I was surprised to find that one of the sons stayed until I came back and wanted to talk to me.

“Lady, you were right! He did hear us!” he told me.

It turned out that the sons had continued talking to their dad after I left and when they said they were ready to leave, their dad opened his eyes, looked at them, smiled and then closed his eyes and peacefully died.

What a wonderful memory for his sons-and me!

CPR (Cardiopulmonary Resuscitation) in the age of Covid 19-What You Need to Know

Several years ago, a nurse friend was with her boyfriend at a concert hall when he collapsed with no heartbeat or breathing. She called for 911, started CPR and asked for an AED (automatic external defibrillator) , which is located in most offices and public buildings. An AED is a sophisticated, yet easy-to-use (even for a lay person with training), medical device that can analyze the heart’s rhythm and, if necessary, deliver an electrical shock, or defibrillation, to help the heart re-establish an effective rhythm.

However, the concert staff didn’t know where it’s AED was.

My friend continued to deliver mouth to mouth an chest compressions while a crowd gathered, some of whom were physicians who told her to stop because it was hopeless.

Finally, an ambulance arrived and took the boyfriend to a local hospital. He not only survived but was discharged 3 days later in good condition and determined to start a healthier lifestyle.

So I was stunned to read an April 21, 202 New York Post article “NY issues do-not-resuscitate guideline for cardiac patients amid coronavirus” (Covid 19) that said New York state had just issued “a drastic new guideline urging emergency services workers not to bother trying to revive anyone without a pulse when they get to a scene, amid an overload of coronavirus patients.” (Emphasis added)

While paramedics were previously told to spend up to 20 minutes trying to resuscitate a person in cardiac arrest, the new guideline was deemed “necessary during the COVID-19 response to protect the health and safety of EMS providers by limiting their exposure, conserve resources, and ensure optimal use of equipment to save the greatest number of lives.’’

First responders were outraged and their union leader said “Our job is to bring patients back to life. This guideline takes that away from us.”

Earlier this month, the Regional Emergency Services Council of New York had issued a new guideline that said cardiac arrest patients whose hearts can’t be restarted at the scene should no longer be taken to the hospital for further life-saving attempts because the city hospitals had been “inundated with dying coronavirus patients to the point where there are frequently no ICU beds.”

One paramedic acknowledged that only a small percentage of people in cardiac arrest-3 or 4 out of 100-are brought back to life through  CPR and other aggressive interventions such as drugs and hospitalization but insisted that “for those three or four people, it’s a big deal.”

On April 22 and just hours after the initial New York Post article was published, the new guidelines were rescinded. New York City’s Fire Department and first responders never adopted the no-revival directive from the state and kept using the traditional 20-minute policy.

WOULD YOU KNOW WHAT TO DO IF SOMEONE COLLAPSES WITH NO HEARTBEAT OR BREATHING?

When I started as a nurse in many decades ago, we were trained in CPR and taught how to use AMBU bags (mask, valve and self-inflating bag) to breathe for patients in arrest or distress in place of mouth to mouth resuscitation. AMBU bags are now standard equipment on ambulances and other rescue services.

Over the years, techniques for CPR changed especially in 2008 when the American Heart Association released new recommendations that bystanders can skip mouth to mouth resuscitation and use “Hands-Only CPR” to help an adult who suddenly collapses:

“In Hands-Only CPR, bystanders dial 9-1-1 and provide high-quality chest compressions by pushing hard and fast in the center of the victim’s chest.”

Now, the Covid 19 pandemic has changed CPR guidelines.

As the April 16, 2020 Notre Dame Fire Department concisely explains on pandemic-modified CPR guidelines for bystanders:

“Bystander CPR (cardiopulmonary resuscitation) improves the likelihood of an individual’s survival from cardiac arrest occurring outside of the hospital. However, coronavirus is spread through respiratory droplets when an infected person coughs, sneezes or talks. If a rescuer breathes into a cardiac arrest individual’s mouth, there will likely be an exchange of respiratory droplets. Household members who have been exposed to the individual at home should not hesitate to attempt life-saving rescue measures.

A non-household bystander who attempts to rescue a cardiac arrest individual should wear a face mask or cloth over his/her mouth and nose and place a face mask or cloth over the mouth and nose of the individual to reduce the risk of transmission.

In the case of an adult in cardiac arrest, lay rescuers should perform at least hands-only CPR. For children, lay rescuers should perform chest compressions and consider mouth-to-mouth ventilation, if willing and able, given the higher incidence of respiratory arrest in children.

To perform Hands-Only CPR, you place your hands in the center of the chest and pump hard and fast at a rate of 100 to 120 compressions per minute.

If an AED (automated external defibrillator) is available, please proceed with opening the AED and following the automated prompts to initiate life-saving intervention. Defibrillation is not expected to be a highly aerosolizing procedure. If an AED is not available, please proceed with Hands-Only CPR.

For all cardiac related emergencies, EMS (911) should be called…For more information, refer to the American Heart Association’s interim CPR guidance.

CONCLUSION

As a nurse, I have participated in many instances of cardiac or respiratory arrest and it’s always stressful. However, the joy of participating in saving someone’s life is indescribable. And even when we were unsuccessful, we had the consolation of knowing that we did everything we could for that person.

I encourage everyone to take a course to learn CPR. To find such a course, you can contact your local hospital or go to the American Heart Association’s Find A Course  or to the Red Cross website.

And I personally thank the courageous New York Fire Department and first responders for upholding the standards of care for all their patients.