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HB 2122 KBM amendment with House engrossed bill 36-418. Do-not-resuscitate orders; minors; parental communication; definitions
A. FOR AN UNEMANCIPATED MINOR WHO IS NOT UNDER JUVENILE COURT JURISDICTION PURSUANT TO SECTION 8-202, A PROVIDER MAY NOT IMPLEMENT A DO-NOT-RESUSCITATE ORDER WITHOUT COMMUNICATING WITH AT LEAST ONE OF THE MINOR’S PARENTS OR THE MINOR’S LEGAL GUARDIAN. THE COMMUNICATION MUST INCLUDE A DISCUSSION OF BOTH OF THE FOLLOWING:
1. THE MINOR’S CARE PLAN, INCLUDING IMPLEMENTING A DO-NOT-RESUSCITATE ORDER AND WHAT THE DO-NOT-RESUSCITATE ORDER MEANS FOR THE MINOR.
2. THE RIGHTS PROVIDED UNDER SUBSECTIONS E AND G OF THIS SECTION.
B. THE COMMUNICATION WITH THE MINOR’S PARENTS OR LEGAL GUARDIAN PURSUANT TO SUBSECTION A OF THIS SECTION SHALL BE MADE WITH A WITNESS PRESENT, OTHER THAN THE PARENTS OR LEGAL GUARDIAN, WHO ISWILLING TO CONFIRM THAT THIS COMMUNICATION TOOK PLACE. THE PROVIDER SHALL IMMEDIATELY DOCUMENT AND RECORD THE COMMUNICATION IN THE MINOR’S MEDICAL RECORD INDICATING WHOM THE COMMUNICATION WAS WITH, WHO WITNESSED THE COMMUNICATION AND THE DATE AND TIME OF THE COMMUNICATION. THE PROVIDER SHALL ASK THE MINOR’S PARENTS OR LEGAL GUARDIAN TO SIGN A WRITTEN ACKNOWLEDGEMENT OF THIS COMMUNICATION.
C. THE REQUIREMENTS OF SUBSECTIONS A AND B OF THIS SECTION DO NOT APPLY IF THE PROVIDER MAKES A REASONABLY DILIGENT AND DOCUMENTED EFFORT TO CONTACT THE MINOR’S PARENTS OR LEGAL GUARDIAN WITHOUT SUCCESS FOR AT LEAST FORTY EIGHT HOURS. IF A DO-NOT-RESUSCITATE ORDER IS ENTERED FOR THE MINOR, THE REASON FOR THAT ORDER SHALL BE DOCUMENTED IN THE MINOR’S MEDICAL RECORD.
D. THIS SECTION DOES NOT REQUIRE A PROVIDER TO INITIALLY PROVIDE ORCONTINUE RESUSCITATIVE MEASURES ON A MINOR IF THE RESUSCITATIVE MEASURES WOULD BE MEDICALLY INAPPROPRIATE BECAUSE PROVIDING THE TREATMENT WOULD, IN THE PROVIDER’S REASONABLE MEDICAL JUDGMENT, EITHER:
1. CREATE A GREATER RISK OF CAUSING OR HASTENING THE MINOR’S DEATH.
2. BE POTENTIALLY HARMFUL OR CAUSE UNNECESSARY PAIN, SUFFERING OR INJURY TO THE MINOR BECAUSE THERE IS NO FURTHER BENEFIT TO THE MINOR IN PERFORMING RESUSCITATIVE MEASURES.
E. AT ANY POINT DURING THE PROCESS DESCRIBED IN SUBSECTIONS A AND B OF THIS SECTION, A PARENT OR LEGAL GUARDIAN HAS THE RIGHT TO REQUEST THAT THE MINOR BE TRANSFERRED TO ANOTHER FACILITY. IF THE PARENT OR LEGAL GUARDIAN REQUESTS A TRANSFER, THE PROVIDER SHALL PROVIDE REASONABLE TIME FOR THE PARENT OR LEGAL GUARDIAN TO FIND ANOTHER PROVIDER THAT WILL ACCEPT THE MINOR BEFORE IMPLEMENTING A DO-NOT-RESUSCITATE ORDER. THE PROVIDER SHALL PROVIDE THE MINOR’S MEDICAL RECORDS TO ANY ACCREDITED FACILITY THAT REQUIRES THE MEDICAL RECORDS TO DETERMINE WHETHER THE FACILITY IS WILLING TO CARE FOR THE
MINOR. IF AN ACCREDITED FACILITY IS WILLING TO ACCEPT THE MINOR, THE PROVIDER SHALL MAKE REASONABLE EFFORTS TO FACILITATE THE TRANSFER.
F. A PARENT OR GUARDIAN MAY PETITION A SUPERIOR COURT IN THE COUNTY IN WHICH THE MINOR RESIDES OR IN WHICH THE MINOR IS RECEIVING TREATMENT FOR AN ORDER ENJOINING A VIOLATION OR THREATENED VIOLATION OF THIS SECTION OR TO RESOLVE A CONFLICT BETWEEN THE PARENTS. ON RECEIVING A PETITION, THE SUPERIOR COURT SHALL ISSUE AN ORDER FIXING THE DATE, TIME AND PLACE OF A HEARING ON THE PETITION AND ORDER THAT NOTICE OF THE HEARING BE GIVEN TO THE INTERESTED PARTIES. A PRELIMINARY HEARING MAY BE HELD WITHOUT NOTICE IF THE COURT DETERMINES THAT HOLDING THAT HEARING WITHOUT NOTICE IS NECESSARY TO PREVENT IMMINENT DANGER TO THE MINOR’S LIFE. IN THE COURT’S DISCRETION, A HEARING MAY BE CONDUCTED IN A COURTROOM, IN A HEALTH CARE FACILITY OR AT SOME OTHER SUITABLE PLACE. A DO-NOT-RESUSCITATE ORDER MAY NOT BE IMPLEMENTED PENDING THE FINAL DETERMINATION OF THE PROCEEDINGS, INCLUDING ANY APPEALS.
G. ON REQUEST OF A PATIENT OR RESIDENT OR A PROSPECTIVE PATIENT ORRESIDENT, A PROVIDER SHALL DISCLOSE IN WRITING ANY POLICIES RELATING TO A PATIENT OR RESIDENT OR THE SERVICES A PATIENT OR RESIDENT MAY RECEIVE INVOLVING RESUSCITATION OR LIFE-SUSTAINING MEASURES, INCLUDING ANY POLICIES RELATED TO TREATMENTS DEEMED NONBENEFICIAL, INEFFECTIVE, FUTILE OR INAPPROPRIATE. THIS SUBSECTION DOES NOT REQUIRE A PROVIDER TO HAVE A WRITTEN POLICY RELATING TO OR INVOLVING RESUSCITATION, LIFE-SUSTAINING MEASURES OR NONBENEFICIAL TREATMENT FOR UNEMANCIPATED MINOR PATIENTS OR ADULT PATIENTS OR RESIDENTS.
H. FOR THE PURPOSES OF THIS SECTION:
1. “DO-NOT-RESUSCITATE ORDER”:
(a) MEANS AN ORDER IN A PATIENT’S MEDICAL RECORD THAT REFLECTS A DECISION TO FORGO CARDIOPULMONARY RESUSCITATIVE MEASURES.
(b) DOES NOT INCLUDE WITHHOLDING OTHER MEDICAL INTERVENTIONS DEEMED NECESSARY TO PROVIDE A PATIENT WITH COMFORT CARE OR TO ALLEVIATE PAIN.
2. “PROVIDER” MEANS A HEALTH CARE FACILITY, A NURSING HOME, A PHYSICIAN WHO IS LICENSED PURSUANT TO TITLE 32, CHAPTER 13 OR 17 OR A NURSE WHO IS LICENSED PURSUANT TO TITLE 32, CHAPTER 15.
Sec. 2. Short title
This act may be cited and known as “Simon’s Law”.
Thanks to the hard work of our staff and constituents we are proud to announce that we have had a major victory in the area of Federal Law.
On Friday September 25th 2020, President Trump signed an Executive Order directing the Department of Health and Human Services to ensure that American hospitals comply with their obligations under federal law to provide appropriate screening and medical treatment or transfer for infants, especially those born prematurely and/or with disabilities, and otherwise promote efforts to improve the survival of such infants.
The same day HHS Secretary Alex Azar announced the reason for this Executive Order…. Our own SimonsLaw Admin Amanda Finnefrock and her tragic story. To listen to the podcast on “Breakfast with bacon“
As a military wife, I’d been through my husband being deployed to Afghanistan as I cared for our young daughter. We have always been very patriotic, loved our country, and so we made a sacrifice to serve the nation we love. It was quite a challenge for us, but for both my husband and I, it pales in comparison to what we endured, how we were violated, when an American hospital here on U.S. soil refused medical treatment for our twins when they were born prematurely. They were treated worse than you’d treat your enemies. . . .
My husband and I had been married 7-1/2 years with two daughters when we found out we were pregnant. At around 16 weeks, we went for an ultrasound and I told the sonogram technician that I’d been extra nauseous and that I’d read that this could be a sign I was pregnant with twins, and sure enough, there were my twins! I was over the moon. My husband and I cried, and our daughters were overjoyed as well. I have a video of them in the room with us exclaiming, “I can’t believe there are two babies!”
At about 20 weeks, I started getting sick with migraines and felt like I was having labor pains. I called the Riverside Methodist Hospital clinic in Columbus, Ohio, who told me this was all normal since I was pregnant with twins. However, it got much worse over the next two weeks, until Saturday morning, June 24, 2017, when I woke up in a pool of blood. I was scared and horrified. I immediately called the on-call resident at the hospital who told me to come right in. On the way there, I remember crying to my husband, saying, “It’s too soon, they’re not going to do anything to save them.” But my husband assured me, “It’s a hospital, they won’t just let them die. They’ll do everything in their power.”
When we got there, we went into a triage room where they brought in an ultrasound machine. When the resident was done with the ultrasound, she had a weird look on her face, then said, “They’re perfectly fine. They’re bouncing around.” But then she directed my husband to hold my hand, and point blank told us, “They’re going to die. Babies at this age don’t survive.”
The resident explained that I was in premature labor, which can happen when you’re pregnant with multiples. At that time, I was at 22 weeks and 2 days. Still bleeding, I was admitted to the hospital and brought into another room.
A neonatologist came in to consult with me that same day. At first, I thought he was a chaplain because he kept urging me to give my children to God, but I persisted that if my children were born alive, I wanted the hospital staff to do everything they could to keep my babies alive — full, aggressive treatment. He told me it was inhumane to try and that babies born this early could have a lot of issues. But these were risks as parents which we were willing to take, and that should be our decision — not theirs. The doctor finally told me that if I were to make it to 22 weeks and 5 days, they would do everything that they could and that he’d be there in the room with us. I have this written assurance in my medical file.
However, he informed me that if I delivered prior to 22 weeks, 5 days gestation, there’d be “no assessment” of my boys (which was never explained to me what that means), and that there would be no attempt to resuscitate them.
But I had the assurance of treatment if I could make it another three days, and that is all I focused on. Still, every time a nurse or any hospital staff came into my room, I begged them to assure me that they’d treat my boys if I delivered them prior to the promised mark.
My priest came to see me the night of 22 weeks, 4 days and prayed with me and anointed me. I felt at peace that I could definitely hold out another day and that my sons were going to receive treatment.
The next day, labor began. I was in tremendous pain, yet was refused an epidural. My mom was with me, but my husband was not able to make it to the hospital in time.
Despite making it to that critical point in gestation set out by the hospital, Riverside Methodist staff still told me as I labored that the boys were coming too early and that its neonatal intensive care unit would not attempt to aid my sons. My heart was in my stomach. It was a nightmare. I just couldn’t believe it. Here I was in labor, preparing to welcome my sons, and the staff all left except for one nurse on a computer who wouldn’t even look at me.
I put lullaby music on my phone and lay my phone on my stomach. My mom and I knew what was about to happen. We were told by the hospital staff that they’d be born dead or would only breathe for a moment, and I wanted them to be comforted as they came into this world. It was me showing them the love of their mother.
I couldn’t see over my stomach, but I heard my mom gasp and through tears, I asked what was wrong, because I thought she was going to tell me he was stillborn, but instead, she said Emery had landed on the edge of the table and was “in his sac” and was moving! She yelled for help. The nurse in the corner did nothing. Finally someone else from the hospital came in, opened the amniotic sac, and then handed him to me.
I was in shock that he was alive. Emery was perfect, just smaller. I was astonished by what I was seeing. He was moving his hands and his feet. I didn’t expect that. I was caught way off guard. I began pleading with the hospital staff to treat him. I have video footage of me begging them, “Promise me you’ll do something.” They told me that the neonatologist was on her way in.
A neonatal nurse did come in, but just wrapped Emery in a blanket, put him under a heat lamp for a couple of minutes, and opened his mouth. Then he was handed back to me.
Emery did not merely “breathe for a moment” as they assured me would be the case. He survived for about 45 minutes, laying in my arms as I was helpless to secure him any further care from anyone else. I was horrified as his breathing began to slow down and he began gasping for air. I pleaded even more fervently for help, but there was just one nurse sitting in the room. I asked her, “Why are you even in here if you’re not going to help?”, and she replied, “I am here to call the time of death.” I was both distraught and absolutely furious. This was unconscionable!
Crying, I cradled Emery in my arms with all the love I had, until he stopped breathing, and his body became lifeless and cold. The nurse confirmed his death. My mother and I continued taking turns holding him.
I asked the nurse what I could expect next. I didn’t feel like I was in labor at this point. My sons were fraternal twins, so was there a possibility my body would hold off for a couple of more days? I wanted to know that Elliot might have the chance to be treated and wouldn’t be left to die like Emery was.
However, a couple of hours later, I began to contract again, and I felt trapped, knowing I’d likely have the same tragic ending. This time, there were several staff members in the delivery room, including a doctor who came in and delivered Elliot, cut the cord, and laid him on my chest.
Elliot was bigger than Emery. Not only was he breathing, like Emery, but he was also kicking a lot and crying — it’s even noted in my hospital records that he was crying. I was really hopeful that Elliot would get treated because he was so vibrant. However, I could see that they weren’t going to treat him, so I begged them for treatment, but no one assessed his needs and just like Emery, he wasn’t provided any medical care. As if I was being a burden to them, I was scolded, “Just stop and let it happen.”
About 10 minutes after Elliot was born, a “cuddle cot” was brought into the room, and I asked what it was for. I was told that it was to cool him and to keep his body from decomposing. Again, I was outraged — “But he’s not dead!” I exclaimed. Even still, while trying to cherish the time I had with him while he’s alive, they refused to remove it from the room. Though the cuddle cot looked like a bassinet, to me, it was like bringing in a coffin as I’m holding my living baby.
Elliot lived for two and a half hours while they did nothing. His decline was different than Emery’s. About 10 minutes before he passed away, Elliot began to bleed out of his ears, nose and mouth, and his body became limp. I was completely horrified and we were both left helpless to do anything.
Though I repeatedly begged the staff to help or assess my babies, I was told they were born too young. However, medical articles prove they were not born too young, though I did not have this information at the time.
After my sons passed away, I made it my personal mission to find out the truth about everything that happened that day, from the truth about statistics of survival, and what this means for other families put in my position. I want to spread awareness and create change through legislative efforts to make sure that no child suffers in the manner that my sons did. I am working with a state senator on Emery and Elliot’s legislation here in Ohio, and I now work to get two other bills introduced and passed here in Ohio as well: Simon’s Law (so doctors cannot place a DNR – Do Not Resuscitate – order on a child without parental consent) and the Good Faith Medical Act (so hospitals must inform patients of their futility policies in advance.)
In July, 2005, The Wisconsin Supreme Court ruled in the case of Preston v Meriter that the hospital (which received federal funds) violated the federal Emergency Medical Treatment & Labor Act (EMTALA) by refusing to screen baby Bridon after he was born at 23 weeks, 2 days. That’s just 4 days past the gestational age of my sons and more than a dozen years earlier, when there weren’t as many medical advances as there are now for the treatment of micro premies. By the time I was sent this article, I’d already missed the one year statute of limitations for medical malpractice lawsuits in Ohio — another law I’d like to see changed. So there is no legal recourse within the court system for me to get justice for Emery and Elliot like Bridon’s parents got for him, but in some way, it gives me a bit of satisfaction knowing that federal law was in fact violated when they failed to assess my sons.
The British Association of Perinatal Medicine updated its guidelines to recommend that babies born at 22 weeks should be treated, citing that 1/3 of them survive in the U.K.. In the BBC article, you’ll see the photo of Ruben and Jenson Powell who in August, 2018, became the youngest surviving pre-term twin boys born in Britain at 22 weeks and six days — they were just one day further than my sons, but the difference is that they were given a chance by doctors.
For those who watched the last State of the Union Address, you may recall President Trump introducing Ellie Schneider, the two year old girl in the gallery who was born at 21 weeks 6 days – 6 days earlier than my sons. The hospital where she was born has a 50% survival rate for children born before 24 weeks.
The Born-Alive Infants Protection Act of 2002, signed into law by President Bush, extends legal protection to an infant born alive after a failed abortion attempt. The Born-Alive Abortion Survivors Protection Act, SB 311, was introduced in 2019 “to prohibit a health care practitioner from failing to exercise the proper degree of care in the case of a child who survives an abortion or attempted abortion.” But we need a law to make it clear that children born alive as early as Ellie Schneider are given equal protection, equal treatment, the equal opportunity for survival — whether they survived an abortion or their mothers wanted them to live, like I did mine.
Emery and Elliot deserved a chance at life, as does every human being on this earth. Please join me in advocating for these children! You never know when this could be your child or your grandchild.
BIO: Amanda Finnefrock is a wife, mother, patients rights advocate/civil rights activist Simon’s Law Admin and now a blogger for Save The 1, and resides in the Columbus, Ohio area. Watch the powerful video footage of Amanda pleading for care as Emery and Elliot fight for life.