Alfie’s Law passed the Iowa House on Monday evening. Republican Rep. Ashley Hinson opened floor debate.
“Children are not supposed to die,” Hinson said. “End of life care is something parents must handle.”
The court shall not override the interest of a parent or guardian, Hinson said. That is the basis of House File 574 — Alfie’s Law.
Democrat Rep. Beth Wessel-Kroeschell introduced an amendment that she claimed would put a process in place in situations where parents did not agree or when no parent wanted to make a decision.
“I’ve had two close friends who have had to face this heartbreaking situation,” she said. “I feel in many ways as I have lived it with them. As I studied this bill, I found it raised more questions for me than it answered.”
Her amendment, she said, states the courts do not have the authority to withdraw life support unless parents disagree or a parent is unwilling to make a decision.
“I prefer that parents make these decisions no matter how hard it is for them,” she said. “However, we have an excellent third branch of the government who I believe is there to step in when we have conflict.”
Hinson thanked Wessel-Kroeschell for the research she put into the amendment, but encouraged members to vote against it.
“I think in essence we’d be creating death panels,” she said.
Wessel-Kroeschell took offense.
“I haven’t heard that term — death panel — in a long time,” she said. “It certainly is a way to stop discussions about what needs to be done in the end of life.”
She recalled the phone call she received from her friend when a decision had to be made for their child.
“I don’t think you would call my friends a death panel,” she said. “They did make it for their son. They made that tough decision.”
The amendment failed 51-43 with six absent.
Wessel-Kroeschell and Democrat Rep. Brian Meyer went back and forth over the term false artifact. Meyer, an attorney, said he had never heard the term and doesn’t believe it appears anywhere in Iowa code. He said the bill doesn’t spell out exactly who gets the final word in these situations.
“This really makes no sense,” he said. “It makes no sense in the way that it’s worded. It makes no sense in who is the final arbitrar in this.”
Democrat Rep. Mary Wolfe said she practiced family law for 25 years and parents will, from time to time, not get along and use a child to get back at the other parent. In the old days, she said, they’d go to a court of equity and have a hearing and the judge would decide. But this bill doesn’t allow that because it says parent and not parents.
“This is a mess,” Wolfe said.
Democrat Rep. Vicki Lensing said she was confused about the bill.
“For a family that’s in this position not to know whether both parents or one parent has that authority and now not having the courts involved and if the parents are in a standoff, I am unclear what happens,” she said. “I just don’t understand.”
Rep. Hinson explained the case she believes provides precedence where a child was unresponsive and had a brain tumor. The parents disagreed and a judge made a decision on which parent would be awarded guardianship.
Lensing still didn’t get it.
“I just don’t see how this helps a family make those difficult decisions,” she said. “I don’t understand how you put one parent over another.”
Democrat Rep. Bruce Hunter inquired more about the term false artifact, which Hinson previously described as an interfering signal that showed some false presence of brain, heart or respiratory activity.
The bill states a parent or guardian has the authority unless there is conclusive medical evidence that the minor child has died and any electronic brain, heart and respiratory monitoring activity exhibited to the contrary is a false artifact.
Hunter asked Hinson how one would know if it were a false artifact or not.
“I’m not a medical doctor, but my understanding is in a medical setting like that it would be very, very clear when this is a false artifact,” Hinson said.
Democrat Rep. Mary Mascher expressed desire to have false artifact defined in code.
“We define everything in code,” Mascher said. “We do have definitions for a reason and it helps clarify it for every individual in this state that it might apply to. No one wants to see families put in these positions, but we know it happens all the time.”
Mascher asked about a situation where a parent abused a child to the point the child was on life support. And what happens if that parent decides to keep the child alive to avoid a murder charge.
“This bill is much more simple than I think the debate has turned it into today,” Hinson said.
Realistically, she said, it lays out what happens if a child is not brain dead. If a child is brain dead, then the hospital and/or the court can make the decision.
Republican Rep. Terry Baxter said the question before the House is who has the final say with a life of a child in this situation. He talked about his own personal experience with his son who was born with Trisomy 13.
His son, he said, had a hole in his heart, a hole in his lung, his intestines weren’t complete and he was facing five surgeries.
“My only question to the ethics committee was this — is our son trying to live or was he trying to die,” Baxter said. “If he’s trying to live, let’s help him. Let’s get him every medical procedure we can and help him. If he’s trying to die, let’s get out of his way.
“We recognized that he could not survive one of those surgeries, let alone four more. We made the decision to disconnect.”
Baxter acknowledged it might seem odd for a pastor to make that decision.
“I have no question that we made the right decision,” he said. “I also have no question that we made the decision — as his parents. You see, sometimes when we pick up these issues we can complicate them by all kinds of hypotheticals. The bottom line is the question before us is simple, and there’s only one question — who has that final decision?”
Republican Rep. Jon Jacobsen who sponsored the bill talked about how the conversation among the bill’s opponents had gone around in circles. At one point, he said, they say parents don’t want to make the decision. Then they say parents do want to make that decision. Then the courts are the most appropriate place for the decision. And then health care providers should make the decision.
He talked about the situation involving Alfie Evans, who Jacobsen said was not even actively dying and just needed breathing treatments along with food and water. But the hospital ethics panel said it was too costly to continue treatment and refused to release Alfie to his parents. Alfie died.
“Everybody said ‘Oh, this could never happen in Iowa,'” Jacobsen said. “How quickly we moved.”
He said the amendment that was offered would’ve provided health care providers with the decision. And that term, Jacobsen said, is a term undefined.
“What we’re trying to do tonight is set up a due process standard so we’ve got objective criteria to address this issue,” Jacobsen said. “If we’d have adopted this amendment, food, water, breathing treatment could’ve been denied over objections of parents.”
Jacobsen said these situations are happening in Iowa where hospital panels are encouraging treatments to be discontinued and this bill is vital to provide parents with the final say.
“If not the parent, who is going to stand up for these children,” he asked. “Even more reason to protect the child with this bill.”
He said it is imperative to error on the side of life in these instances.
“It’s too late if the child has died and the due process happens after that,” he said.
Jacobsen closed his comments with a line to remember.
“If we take that right away from parents we’re going way beyond where New York is and Vermont,” he said. “We’re moving from infanticide to pedicide and it’s damnable and it’s despicable.”
The bill passed 58-36.