Year after Jerika Bolen’s death, debate continues on right-to-die issues – USA TODAY

Jerika Bolen, the 14-year-old who made headlines when she decided to stop treatment for Type 2 Spinal Muscular Atrophy, has died.

Jerika Bolen and her mother, Jen, share a moment on the way to a July 2016 prom in Appleton, Wis. Jerika died in September 2016, after she decided to end treatment for an incurable genetic disease.(Photo: Danny Damiani, The (Appleton, Wis.) Post-Crescent)

APPLETON, Wis. Nearly one year after a Wisconsin teen with an incurable genetic disease announced her intention to go without a life-sustaining ventilator, experts say her case has had surprisingly minimal impact on the right-to-die debate.

"I fully expected it to continue in the dialogue," said Paul J. Ford, director of the NeuroEthics Program at Cleveland Clinic, about Jerika Bolen's story.

Jerika, of Appleton, Wis., died last September after a lifelong battle with spinal muscular atrophy type 2, which destroys nerves cells in the brain stem and spinal cord that control voluntary muscle activity. Her death last year came after a final summer that included a prom in her honor in July.

When I decided, I felt extremely happy and sad at the same time, Jerika told USA TODAY NETWORK-Wisconsin in July 2016. There were a lot of tears, but then I realized Im going to be in a better place, and Im not going to be in this terrible pain."

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Jerika's decision drew national attention, including an overwhelming amount of support from well-wishers worldwide. But her story also drew the ire of disability rights groups who attempted to intervene in Jerika's decision to stop treatment.

For Jerika's case, it really pushes the boundaries between the right to refuse treatment and assisted suicide.

"It was an exceedingly complicated case," said Arthur Caplan, head of the division of bioethics at New York Universitys School of Medicine. "(Jerika) was 14, so not quite old enough to be legally able to make her decisions, but old enough that many (medical experts) would say she was old enough to help determine her care."

Jerika was mostly immobile and in chronic pain from spinal muscular atrophy. She ranked her pain as a seven on a scale of one to 10 on her best days.

Medications had damaged her body. She had more than 30 visits to operating rooms. She had her spine fused in 2013 and the heads of her femurs removed in 2015.

The day of Jerika's death, Jen Bolen, who declined to be interviewed for this story, told USA TODAY NETWORK-Wisconsin that "no one in their right mind would let someone suffer like she was.

"Suffering is a pretty strong, compelling reason to back away," Caplan said.

Not Dead Yet, a national disability rights group, was one of five disability rights groups that asked authorities to conduct an investigation into Jerika's care.

Diane Coleman, Not Dead Yet's president and CEO, said the groups questioned Jerika's decision to die, as well as the public's response.

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"We were trying to be gentle and respectful, but also to say that Jerika had a lot to live for, even if she couldn't yet see that herself," Coleman said.

(Jerika) was 14, so not quite old enough to be legally able to make her decisions, but old enough that many (medical experts) would say she was old enough to help determine her care.

A letter Not Dead Yet and other disability rights groups wrote in early August 2016 raised questions about Jerika's care and said the teenager was "clearly suicidal." Disability Rights Wisconsin also wrote a letter to Outagamie County, Wis., child protection authorities.

"For Jerika's case, it really pushes the boundaries between the right to refuse treatment and assisted suicide," Coleman said. "If she had continued using her (ventilator) ... things would be different, and she didn't get to get there.

"Almost all of the coverage supported her death. That's what's wrong."

Ford said it's difficult from the outside to understand a person's life and level of suffering.

"(Jerika) went through a lot," Caplan said. "She knows more about that than many people weighing in on what should happen."

Caplan said Jerika's story didn't take on the dimension of Terry Schiavo, a Florida woman who remained in a "persistent" vegetative state for 15 years, or Brittany Maynard, a 29-year-old with brain cancer who relocated to Oregon so she could legally kill herself with medication.

"(Jerika) was saying, 'I've been through so much. I don't want to do this anymore,' " Caplan said. "Which is an important question, but it isn't quite analogous to what happens either when someone requests help in dying or says, 'I don't want to be maintained because I'm so old and so frail that there's no point.' She was in a different situation."

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Caplan said Americans are "completely and utterly confused" about right-to-die issues, including how to deal with mental impairment in dying, whether to honor a child's request and even what constitutes death.

"Where views diverge is saying how much suffering is too much to ask someone to bear, and whose responsibility is it to partake in ending a life if it's more suffering than anyone ought to bear," Ford, the Cleveland Clinic ethicist, said.

One of those issues is physician-assisted suicide. Public opinion about the practice remains divided: a 2013 Pew Research Center survey found that 47% of Americans approve of laws to allow the practice for the terminally ill, while 49% disapprove.

Five states California, Colorado, Oregon, Vermont and Washington and Washington, D.C., have legalized the practice, and Montana recognized it following a state Supreme Court ruling.

Ford said there was "a great energy among states" to continue the legislation for terminally ill adults a year ago.

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"Those have sort of taken a backseat, recently," he said.

Earlier this year, Wisconsin State Rep. Sondy Pope introduced legislation, modeled closely after other physician-assisted suicide laws, that would allow terminally ill Wisconsin adults to receive medication to end their lives.

Pope, who conceded that the legislation has no immediate chance of becoming law, said she would support legislation to allow a minor who isn't terminal to die with "very, very thoughtful safeguards that include input from loved ones."

"That's way down the road in a case-by-case individual basis ... It doesn't seem right, morally, to say, 'I'm sorry. You're not 18. You have to suffer.' "

Follow Ethan Safran on Twitter:@EthanSafran

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Year after Jerika Bolen's death, debate continues on right-to-die issues - USA TODAY