By Kristy Demas
U-M Law
The death of a child is a parent’s worst nightmare, but for parents of terminally ill children, how that child dies can be just as excruciating. Students from Michigan Law’s Pediatric Advocacy Clinic (PAC), under the direction of Clinical Professor Debra Chopp, have been working on legislation that would give parents in Michigan greater control over end-of-life care for their children.
Their work stems from a case involving Willy Picket from Saline who was born with a brain condition that, doctors speculated, might allow him to reach age 2. Despite his short life expectancy, his mother, Dawn Krause, made every effort to ensure his happiness and comfort. She found him a school with a swimming pool—which he loved—and met his numerous medical needs around the clock, which likely contributed to him outliving doctors’ predictions by nine years.
During those years, however, multiple health setbacks forced Willy’s parents to contemplate his imminent death. They ultimately decided to sign a do not resuscitate (DNR) order for him under the advice of Dr. Kenneth Pituch, Willy’s palliative care physician at U-M’s C.S. Mott Children’s Hospital. Pituch said measures like CPR would not extend Willy’s life, but would instead cause him pain and distress.
Despite the parents’ difficult decision to write a DNR for Willy, Washtenaw Intermediate School District, where Willy was enrolled, refused to honor it. The district wanted the family to obtain a court order enforcing the DNR—something Willy’s family wasn’t sure how to pursue.
Enter Chopp and the PAC student-attorneys, who were contacted by the family’s hospital social worker. “Willy and his family were dealing with a huge burden and needed an advocate,” said Chopp. “Once we heard about the case, we stepped in.”
Many of the specialty clinics at Mott refer their toughest cases to the PAC.
“We have a long-standing medical-legal partnership with these providers,” said Chopp. “The cases we see affect the most vulnerable families, like Willy’s, whose case we took even though we weren’t sure where to start.”
Sadly, Willy died while litigation against the Washtenaw Intermediate School District was pending. But the problem persisted for other children in the state. Chopp and her students wanted to figure out a way to address it for more than one child at a time. They decided to start with a strategy session where students like 3L Dorian Geisler brainstormed solutions.
“I was not expecting my clinical work to be at this level—dealing with so many stakeholders in the medical community, the schools, and in Lansing,” said Geisler.
“I was inspired by the hospital staff who were working on this outside of their normal jobs—a situation fraught with legal components.”
Learning as they went along, Chopp’s students took the case from the office to the capitol building in Lansing. Their work included filing Freedom of Information Act requests for the DNR policies from every intermediate school district (ISD) in the state—some ISDs do not have one—and meeting with Scott Menzel, superintendent of the Washtenaw Intermediate School District. Eventually, the students worked with Chopp to draft legislation that would amend the Michigan Do-Not-Resuscitate Procedure Act to ensure schools would be obligated to honor a DNR in place for one of their students without being held liable for doing so. Chopp testified on behalf of the amendment in early February.
While Menzel initially had refused to honor Willy Picket’s DNR without a court order, he, too, wound up testifying in Lansing in support of the amendment that Chopp and the students drafted, because it would remove liability from schools. The legislation, which is pending after being introduced by Senators Rebekah Warren and Rick Jones, would apply to a miniscule, but growing portion of society—school-aged children with terminal illnesses.
“With updated medical care and procedures, children with incurable diseases are living much longer. And, Michigan law requires that all students with disabilities be given a free appropriate public education up to age 26 if they are developmentally/cognitively impaired, so the number of children potentially needing this protection is increasing, and will continue to do so,” Chopp explained.
“This bill was not just about Willy, but about kids like him, whose parents will know that when the time comes, their child will leave this life as painlessly as possible.”
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