Wisconsin teen is latest round in right-to-die fight
Groups step in to prevent stop in treatment
Child-protection authorities were first asked to investigate a Wisconsin teenager’s decision to die more than a month ago, according to referrals obtained by USA TODAY Network.
The disability rights groups that filed the referrals hoping to halt 14-year-old Jerika Bolen’s plans to enter hospice care and cease treatment of her incurable disease say they still have not received word from state or county officials on whether any action is being pursued.
“We hope they’re doing what they’re supposed to be doing,” said Mitchell Hagopian, attorney for Disability Rights Wisconsin. “They’re the emergency responders. We’re not.”
The two child-protection referrals obtained by USA TODAY Network on Wednesday cite child neglect on the part of Jerika’s mother, Jen Bolen, as their basis for seeking an investigation. They refer to Jerika’s desire to undergo hospice care as a suicide plan.
Jerika’s treatment status is unknown. Her mother declined any further comment regarding her daughter’s current or forthcoming medical care.
More than a decade ago, Americans took sides in a bitter, faith-tinged battle over the right to die. We watched as Terry Schiavo’s family fought over what they believed were the Florida woman’s wishes.
As the world watches what could be the final days of Jerika, a different drama is unfolding: The kid just threw herself a goodbye party — and many, many people are cheering.
Have we turned a corner on this fraught issue over the past 11 years? Medical ethicists say not so fast.
As painful as Jerika’s case is, hers is not like Terry Schiavo’s,
whose medical drama dragged on for years, ensnaring lawmakers right up to President George W. Bush, said Arthur Caplan, head of bioethics at New York University’s Langone Medical Center.
The case of Schiavo, a Florida woman whose heart stopped in 1990, and who lay in a “persistent vegetative” state until her death in 2005, divided the USA and hardened many Americans’ positions on the “right to death,” as well as religious objections to physician-assisted suicide.
At the time she was hospitalized, Schiavo, 26, left no written instructions in the event she became disabled. Her husband, Michael, said she never would have wanted to be kept alive in that state, which court-appointed doctors said held no hope of recovery. But Schiavo’s parents maintained she would benefit from rehabilitation. A long fight followed — President Bush even signed a bill allowing a federal court to intervene in the case.
Schiavo died at age 41 at a Florida hospice after a federal judge refused to order the re-insertion of a feeding tube that had been removed under court order.
That case, Caplan said, was an outlier, “partly because the family was so deeply divided, partly because the issue became so political.”
Schiavo was unable to make her own medical decisions, or even to speak. “Part of the dispute was, ‘Who gets to make decisions for her?’ ”
The case also involved religious considerations — her family was Catholic, and part of the dilemma involved caregivers trying to figure out if she still considered herself a Catholic and thus would oppose ending her own life.
Paul J. Ford, director of the NeuroEthics Program at Cleveland Clinic, said Jerika’s case seems closer to those of cancer patients who reject treatments such as chemotherapy.
Ford also compared Jerika’s case to that of Brittany Maynard, 29, who was diagnosed with a malignant brain tumor and relocated to Oregon so she could legally kill herself with lethal medication in 2014. She wrote at the time that death by stage 4 glioblastoma would be “a terrible, terrible way to die.”
Ford said Maynard “wasn’t going toward death, she was living life fully until she couldn’t. Everything suggests that this young lady (Jerika) is doing that.”
He said Jerika has earned a real measure of respect for her suffering, which has included nearly 40 surgeries. “She has worked so hard and has been cared for so well and is pretty articulate. This isn’t somebody who just got a diagnosis and gave up.”
Carrie Ann Lucas of the Colorado-based Disabled Parents Rights said her organization is one of several that has asked for child-protection authorities to investigate.
Jerika’s decision to enter hospice care in September gained national attention after she and her mother said the girl would forgo a ventilator at that time.
Jerika suffers from Spinal Muscular Atrophy Type 2, often referred to as SMA. It’s an incurable disease that has left her in constant pain — on her best days, she says, she’s at seven on a 10point scale.
. At 14, her movement is mostly limited to her head and hands. Her story drew an outpouring of support when her family, friends and her care team held a prom, dubbed “Jerika’s Last Dance,” in July.