Jerika Bolen, 14 suffers from Type 2 Spinal Muscular Atrophy which leaves her in constant pain. She says she wants to "be free" and scheduled her own death. Now, disabled parent's activists are trying to intervene.
Jerika Bolen sits with her mother Jen Bolen in the limo from their home to the Grand Meridian where Jerika's prom is held on July 22, 2016, in Appleton, Wis.(Photo: Danny Damiani, USA TODAY NETWORK)
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 Bolen, a Wisconsin teenager who has decided to stop medical treatment for an incurable disease, 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 the division 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 actually an outlier, “partly because the family was so deeply divided, partly because the issue became so political.”
First and foremost, 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 because of uncertain success rates and high toxicities.
Ford also compared Jerika’s case to that of Brittany Maynard, the 29-year-old diagnosed with a malignant brain tumor who 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." She added, "being able to choose to go with dignity is less terrifying."
"There is not a cell in my body that is suicidal or that wants to die," she said at the time. "I want to live. I wish there was a cure for my disease but there's not."
Ford said Maynard “wasn’t going toward death — she was living life fully until the time that 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.”
Disability rights groups this week are attempting to intervene in Jerika’s case. 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.
“A child doesn’t have the capacity to make those types of decisions, and under the eyes of the law, this is a child,” Lucas told The (Appleton, Wis.) Post-Crescent Tuesday.
Jerika’s decision to enter hospice care in September gained national attention after she and her mother, Jen Bolen, said the girl would forego a ventilator at that time, essentially scheduling her own death.
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 10-point scale. SMA destroys nerve cells in the brain stem and spinal cord that control voluntary muscle activity. She has said that the pain — and the need for more invasive medical interventions — will only grow as her body continues to deteriorate.
Jerika was diagnosed as a baby and has never walked. 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.
Lucas said her organization is not asking that Jerika be removed from her mother’s care, as advocates did in Schiavo's case long ago. But she said the girl needs mental health care, not help ending her life.
Ford, the Cleveland Clinic ethicist, said Jerika’s case is “pretty compelling,” partially because the teenager has publicly articulated so clearly what she has been through and how she feels.
“She’s undergone a lot, and it’s hard to pass judgment on her without either having been there or suffered through it,” he said. “I sure wish somebody had a better option.”
It’s hard to criticize someone who might say, “Keep fighting,” Ford said, “But it’s also hard to criticize her for saying, ‘I’ve fought this hard. Now’s the time when you need to let the disease take its course.’”
Caplan said Americans are “slowly accepting — very slowly — assistance in dying,” and are more widely beginning to accept the right to stop treatment. He noted that only four states recognize a person’s right to die, but one of them, California, is so large that it grants the right to millions of people.
Still, he said, critics believe that people shouldn’t be able to bring about one’s death before it ought to take place. “There’s clearly a right-to-life position that says it’s never right to hasten your death. … That shows a kind of division of opinion around the country about how to manage dying, which is important.”
Public opinion on the topic is evolving, and not necessarily in a clear direction.
When the Pew Research Center in 1990 asked Americans if there were circumstances in which a patient should sometimes be allowed to die or whether medical staff should do “everything possible” to save that patient, only 15% said doctors should do “everything possible.” By 2013, that figure had essentially doubled to 31%.
But about two-thirds of U.S. adults in 2013 also said there are circumstances when a patient should be allowed to die. Nearly as many said they believed in a “moral right to suicide” when a person is suffering great pain with no hope of improvement.
“These are complex issues,” said Cary Funk, associate director of research and one of the lead authors of the 2013 study. “These things are complicated — everyone’s situation is different.”
Observers need look no further than Jerika’s “prom” for a good indicator of how divided we are: Her decision drew pleas that she change her mind, including from adults with SMA. Lucas, of the disability group, said Jerika's disease is progressive but not “acutely terminal.”
A decision to die, she said, is “never in the child’s best interests.”
Yet more than 1,000 people showed up for the party, with police and firefighters providing a motorcade. She received cards and gifts from around the world and shout-outs from a number of celebrities.
“People generally are reluctant to publicly cross swords with a dying adolescent and their family,” Caplan, the NYU bioethicist said. “It seems intrusive and cruel, even if you think it’s the wrong thing to do.”
Contributing: Jim Collar, The (Appleton, Wis.) Post-Crescent; Follow Greg Toppo on Twitter: @gtoppo