Thursday, September 8, 2016

Jerika Bolen

Child protection authorities were first asked to investigate an Appleton teenager’s decision to die more than a month ago, according to referrals obtained by USA TODAY NETWORK-Wisconsin.

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-WISCONSIN 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. Jen Bolen declined any further comment regarding her daughter’s current or forthcoming medical care. Their whereabouts are unknown.

Colorado-based Disabled Parents Rights and three other disability organizations sent a joint letter on Aug. 4 to the Wisconsin Department of Children and Families seeking intervention.

"Ms. Bolen is clearly suicidal," the letter states. "This teenager deserves intervention rather than assistance to end her life."The law in part defines neglect as a caregiver’s “failure, refusal or inability” to provide “medical or dental care or shelter so as to seriously endanger the physical health of the child.”

Hagopian said a child protection investigation would provide an appropriate check on a life-and-death decision. He suspects an investigation would rely heavily on the opinions of Jerika’s care team. A probe wouldn't necessarily change Jerika's plans.

“Maybe there’s some reason we don’t see that palliative care is appropriate,” he said.

Jerika was diagnosed as a baby with Spinal Muscular Atrophy, often referred to as SMA. The incurable disease destroys nerve cells in the brain stem and spinal cord that control voluntary muscle activity. Jerika has never walked, and today her movement is mostly limited to her head and hands. She said she's in constant, significant pain and recognizes her already limited physical capabilities will continue to decrease.

Her story drew an outpouring of support from across the country this summer. More than 1,000 people arrived when her family, friends and care team held her last-wish prom, dubbed J’s Last Dance, in late July.

Hagopian said his organization advocates for self-determination in medical care for adults, but argues children don't have the capacity for those decisions. He questioned Jen Bolen's support of her daughter's decision.

"The fact that her daughter has expressed a wish to end her life in this fashion is not the deciding factor," he wrote in the request for an investigation.

Lisa Pugh, public policy director for Disability Rights Wisconsin, questions whether Jerika's decision was based on the best information. Medical professionals sometimes make poor assumptions when counseling disabled patients on quality-of-life issues, she said.

“We’d never want somebody’s opportunity to be narrowed by someone else’s assumption of what their life will look like,” Pugh said.



  1. Recently, questions surrounding a Wisconsin teenager's decision to die prompted child protection authorities to investigate the decision. Jerika Bolen, 14, plans to go off of her ventilator and enter hospice care this month. Bolen suffers from Spinal Muscular Atrophy Type 2.

    Here are a few common questions about the right to die:

    What is it?

    The term right to die can be used when referring to refusing medical treatment or requesting medial aid for dying. No minors, even with parental consent, have access to medical aid for dying, Sean Crowley, media relations director at Compassion and Choices said. Minors, like Bolen, with parental consent do have the right to refuse medical treatment, such as removing a ventilator. Euthanasia and assisted suicide are other terms often thrown into these conversations, but both are illegal and prosecutable.

    Defining the terms

    Right to die: Not a formal term, but usually refers to laws surrounding refusal of medical treatment or requests for medical aid for dying. Refusing medical treatment is open to any adult nationwide. Medical aid for dying is available in five states.

    Euthanasia: A physician or healthcare professional administers medical aid for dying. This is illegal.

    Assisted suicide: Where one person helps another end their life. “This is like someone handing you a gun,” Crowley said. This is prosecutable.

    Find more commonly-used end-of-life terms from Compassion and Choices here.

    What is legal?

    Medical aid for dying is authorized in five states — Oregon, Washington, Montana, Vermont and California. In these states, terminally ill, mentally capable people 18 years and older prognosis with six months or less to live can request medication for death. They must be able to self-administer the medication and the decision must be approved by two physicians. Because the individual is self-administering the medication, medical aid for dying is different than assisted suicide and euthanasia.

    Brittany Maynard, a 29-year-old with terminal brain cancer, moved to Oregon to legally die with medical aid. Maynard, who was originally from California, inspired California’s current end-of-life law.

    In states without aid in dying, Death with Dignity says competent individuals with terminal or life-limiting diseases have the right to refuse medical therapies, stop eating or drinking or use palliative sedation. Palliative sedation keeps individuals unconscious until death. A medical provider determines if it is appropriate.

    Who’s for it and who’s against it?

    For it: Stephen Hawking said he would consider ending his life if he had "nothing more to contribute." He said keeping someone alive against their wishes is “the ultimate indignity," in a BBC interview. "Sex and the City" star Kim Cattrall has also expressed support, saying she'd like to have a say in how she dies in a post on Dignity in Dying.

    Against it: Pope Francis is against the right-to-die movement, saying it’s a "false sense of compassion” and a sin. The National Right to Life Committee says right to life laws "threaten to pressure sick and disabled populations to take their lives."

  2. 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.


  3. 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.” (continued)

  4. (continued)

    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.

    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.”

  5. The case of sweet Jerika Bolen inspired the world this summer.

    The 14-year-old Appleton teenager with an incredible depth of self-awareness decided, in concert with her mother, to stop the endless surgeries, the endless pain and round-the clock care that keeps her alive, paralyzed in her own wheelchair-bound body.

    Collectively, we stood up to applaud Jerika’s bravery and to honor her for living life on her own terms.

    Now, because of the courage she showed by sharing her story — one that moved countless others in similar situations — Jerika’s case is being appropriated by groups trying to further their own agenda.

    Make no mistake about it: The disability rights groups that saw our coverage of Jen and Jerika Bolen have twisted the story into a way to further their causes.

    Jerika did not ask for this, and Jen does not deserve to have accusations lobbed at her by outsiders for doing nothing more than being a supportive mother. They have already been through hell because of Spinal Muscular Atrophy Type 2.

    The groups Disability Rights Wisconsin, Disabled Parents Rights, Not Dead Yet, Autistic Self Advocacy Network and NMD United have asked the state to investigate the family. All they’re doing is complicating what is already the most difficult experience a loving family could go through.

    Their take: “Jerika and her mother do not appear to be making decisions that are in Jerika’s best interests.”

    Our take: Yes, they are. They have weighed all of their options for years.

    Their take: “Ms. Bolen is clearly suicidal.”

    Our take: No, she is not. She is clear-minded in her choice to stop using a ventilator that pumps air into her 12 hours a day. She describes it this way: “I’m going to be in a better place, and I’m not going to be in this terrible pain.”

    Enough. These groups should drop their crusade and let the Bolens spend their remaining time together in peace.

    Anything else is cruel.

  6. "She's only 14 and we know that the brain is not fully matured," Carrie Ann Lucas, founder and executive director of the Colorado-based Disabled Parents Rights, told Fox News. The group is asking Wisconsin's Department of Children and Families to intervene in the girl's case.

    "There's a reason why we don't let 14-year-olds join the military, there's a reason why we don't let 14-year-olds vote. We don't let 14-year-olds make their own medical decisions" Lucas, 44, added.

    Lucas, who has a form of multiple sclerosis and is reliant on a ventilator, doesn't believe the disease Jerika suffers from is imminently fatal. She also believes Jerika may be in pain because she isn't getting the medical care she needs. If a doctor can help ease the pain, Lucas thinks Jerika might have a better quality of life.

    Lucas said she also fears Jerika's decision to end her life might have been formed from the negative way disabled people are portrayed on TV or in movies.

    "We very often see our lives devalued… not being dignified and really that we're in many ways better off dead than disabled," she said.

    Wisconsin law is murky on how to handle Jerika Bolen's situation.

    As a minor, Jerika is legally considered to be "incompetent" by the state. Her mother's support might make a difference, however. According to a Wisconsin court ruling on the 2014 case of Disability Rights vs. University of Wisconsin Hospital and Clinic, "…in the absence of a persistent vegetative state, the right of a parent to withhold life sustaining treatment from a child does not exist."

    According to Wisconsin attorney Kristen Scheuerman told Fox News, "In the absence of any litigation, it's a moral question with legal implications because if a mom or someone else acts there could be potentially legal consequences to those choices."

  7. Jerika Bolen, the 14-year-old Appleton girl whose decision to end treatment of her brutal disease drew nationwide support and stoked new debate on right-to-die issues, died on Thursday, her mother, Jen Bolen, said.

    Jerika followed through on her decision to enter hospice and end an arduous, lifelong fight against Spinal Muscular Atrophy Type 2, an incurable and progressive disease that racked her body and brought continual pain. She died at Sharon S. Richardson Hospice in Sheboygan Falls. Jerika never walked, and as a teen only had movement in her head and hands.

    Her decision to cease treatment and the planning of a special prom in her honor in July — her last wish — drew national attention and an outpouring of affection. She later became a focal point of debate.

    “My only words to anyone questioning this is that I love that girl with every cell in my being,” Jen said Thursday, “and no one in their right mind would let someone suffer like she was.”

    Jerika made peace with dying, knowing that to continue would mean greater hurt, loss of her already limited function and still more trips to the operating table. But it was no quick or easy decision, she said earlier this summer, mostly in recognizing the grief her mother would experience.

    “When I decided, I felt extremely happy and sad at the same time,” Jerika said in July. “There were a lot of tears, but then I realized I’m going to be in a better place, and I’m not going to be in this terrible pain.”

    Their story — one of an unflappable mother-daughter bond and the emotion of trying to figure out just how to say goodbye — resonated with people around the country, many of whom reached out to the family via social media.

    Jen Bolen said she understood her daughter’s decision, and had for several years prepared herself to stand behind her when the pain became too much. But it was a process easier said than done. “I wish there was some sort of instruction book,” Jen said.

    The prospect of saying goodbye grew more difficult with every passing day.

    “There’s part of me still holding onto that thread,” she said in late July. “Is she absolutely sure?”

    Jerika never wavered in her decision, but she was intent on a having a full summer with friends and family — especially her mom — before letting go.

    Jen, a nurse and single mom, stayed busy with plans for the prom, dubbed “J’s Last Dance.” More than 1,000 well-wishers would flock to Appleton’s Grand Meridian banquet hall on July 22 for a night that included a police escort and a visit from one of Jerika’s favorite celebrities, YouTube music star Richie Giese.

  8. Friends and family said Jerika’s true beauty was demonstrated by how she lived day in and day out.

    Robb Valentyn, director of the annual Muscular Dystrophy Association summer camp in Green Lake that Jerika attended, said Jerika refused to let her disease get in the way of living life.

    “There’s a light she brings everywhere she goes,” Valentyn said. “It’s amazing how she doesn’t let it affect her day to day, and she has the worst form of this disease imaginable. It’s great for these 40 or so other kids at camp to see. When it comes down to it, it’s about keeping a positive attitude.”

    She was every bit a teenage girl. At 14, she liked hair dye and would frequently switch her look — but always to bright colors. She liked alternative music, watching videos on YouTube and playing computer games. Over the summer, she was often out in the company of friends or nurses for sessions of Pokemon Go, a game she promptly proclaimed “the best app ever.”

    Friends said Jerika wore a wide smile throughout her life, a smile that often masked intense pain.

    “Even she can’t put into words the pain she’s in,” Valentyn said. “But if she’s in the hospital and you’re on the phone with her, you’d never know it.”

    She wasn’t one to complain — it was her biggest pet peeve. She also wasn’t one to get jealous. She enjoyed the abilities of other kids and watched as they engaged in dance or gymnastics.

    Angie Frank, one of Jerika’s private duty nurses, said she had “a twisted sense of humor, and it’s endearing.”

    It was a function of Jerika making the most of life from her one place of strength, her mind.

    “She’d think day and night of different things and from different angles,” she said.

    As cards and gifts poured into their home this summer after a Post-Crescent story introduced her to the world, Jerika’s humility shined through. She said she was baffled by all the love and attention.

    “I’m just a nobody,” she said, but she enjoyed her sudden celebrity status and the new attention it brought to Spinal Muscular Atrophy.

    “People are more aware of my disease, because not a lot of people knew about it,” Jerika said. “Now we’re spreading the word and that’s really good.”

  9. Jen knew something was wrong at 8 months when her daughter went from nearly crawling to an inability to hold herself up.

    After receiving a devastating diagnosis, she vowed to give her daughter a full, rich life — and one that went far longer than doctors suggested she could expect. She was initially told Jerika would be lucky to make it past her second birthday...

    Jen said she lived for the fight through Jerika. But as a nurse, she also understood they were running out of options and Jerika was more interested in truly living than in longevity.

    “I still can’t believe we’re doing this,” Jen said in early summer. “The quality is kind of gone, and that’s where we’re at.”

    Jerika’s hospice decision didn’t come without controversy.

    Those who’ve lived with the disease into adulthood were among the most vocal in expressing hope that Jerika would change her mind.

    A video plea from Jordan Schroeter, a Grafton man with Spinal Muscular Atrophy, went viral.

    “Please reconsider your decision,” he told her. “I know your pain and everything you're talking about, but sweetheart, you have so much left to give."

    Adults with neuromuscular diseases engaged in a letter-writing campaign to the teen.

    Others were more direct in their attempts to intervene. Five disability rights groups reached out to child protection authorities and asked for an investigation into Jerika’s care.

    But Jen defended her daughter at every turn.

    Every case of Spinal Muscular Atrophy is different, and for Jerika, its impacts came strong and early. And her life became far more difficult over the last three years. At age 11, hospital stays grew frequent — “I don’t even know how many times that year,” she said.

    Last year, she had the heads of her femurs removed as a pain relief measure — but it didn’t work. She had her spine fused in 2013. She would soon need a gastrointestinal surgery, and when her ventilator could no longer keep up, a tracheotomy.

    Those who didn’t know Jerika and those who hadn’t been along on their journey simply couldn’t know, Jen said.

    “Any real parent who’s seen the suffering she’s had would be making this same decision — would let her make this decision,” she said.

  10. Jerika said she had her last surgery to appease her family, but her constant medical care is “tearing them apart” and it’s “making them really sad that I’m going on hospice.” She also said she does not have a good “quality of life.”

    Her mother, Jen Bolen, said she initially resisted her daughter’s plan to end her life, but later came to support it.

    “I know she’s only 14, but she’s old enough to decide,” Jen said. “It’s her body and it’s her pain.”

    However, Disabled Parents Rights and several other groups asked the local child protection services to investigate the situation. They argued that the young teen needed intervention, not encouragement to end her life. It is not clear from news reports whether an investigation was conducted.

    “I am certain Jerika suffered greatly during her inspiring life and I am certain her family endured untold psychological pain, alongside their daughter’s mental and physical anguish. And, yet, I believe that they erred in collaborating in her ending her life,” psychiatrist Dr. Keith Ablow wrote in reaction to the news of Jerika’s death at Fox News.

    Ablow commended Jerika’s family and friends for encouraging her to make the most of life, taking her to movies and sleepovers, enjoying fireworks and a prom together, but he questioned why she was not encouraged to persevere and look forward to other joys in her future.

    “Might she have been motivated to continue living were she introduced to children much younger than her, also suffering with Spinal Muscular Atrophy, who needed encouragement to get through their own immense challenges?” Ablow wrote.

    “I do worry that when a 14-year-old asserts she wants to die that she could be searching, unconsciously even, for an ironclad objection by those who love her, in order for her to love herself and love life just a tiny bit more. Just enough to stay with them,” he added.

    He also questioned whether more could have been done to alleviate Jerika’s physical pain.

    It’s a question that the disability rights group Not Dead Yet, which opposes assisted suicide and euthanasia as deadly forms of discrimination, has as well. They group said it was shocked and grieved by the young girl’s death, and its members are wondering whether more could have been done to help Jerika.

    In a statement, the group said people with Jerika’s condition usually live full lives into adulthood when they receive proper medical care. They criticized “a system that would so callously throw away the life of a beautiful disabled girl.” The group wondered how Jerika got the idea to end her life and whether she received counseling related to her suicidal thoughts, which are common among teens.

    One of Jerika’s comments seemed to indicate that her decision could have been influenced by fears of being a burden to her family.

    “I sat myself down and I thought, ‘Jerika, am I here for me or am I here for my family? I can’t even do anything besides lie in bed because I’m so sore,’” she said during one interview...

    Not Dead Yet concluded: “Jerika Bolen deserved better quality health care and the same suicide prevention that a non-disabled teen would receive. “We ask one last question: What might have happened if Jerika’s request for a ‘last dance’ had been met with overwhelming public and media encouragement to live instead of a massive thumb on the scale in support of her death?”

  11. Disability advocates questioned Jerika’s care, claiming that severe pain isn’t characteristic of the disease. New York advocate Dominick Evans said his questions came from personal experience. Evans has spinal muscular atrophy type 3 and said teens with disabilities easily lose a sense of their self-worth.

    “Our society teaches us that disability is bad, that disability will kill you, and that’s a horribly oppressing thing for a teenager to hear,” said Evans.

    Evans was among those expressing concern for Jerika’s emotional state and whether she was influenced by others.

    Not Dead Yet, a New York-based anti-euthanasia organization, criticized the news coverage as “one-sided applause for her suicide.”

    The group joined with Disabled Parents Rights, NMD United and the Autistic Self Advocacy Network to send a letter to the state Department of Children and Families to ask that they investigate Jerikas’s care.

    Disability Rights Wisconsin sent a separate letter to Outagamie County child protection authorities.

    The newspaper said both agencies declined to comment following Jerika’s death.

  12. In consultation with her doctors and family, Jerika Bolen was more practical and thoughtful than many of us are who are five times her age. Kudos to her for finding her way to a thoughtful end, happily — and sadly, I'm sure — shared with her family and friends. And kudos to her courageous mother for allowing and understanding her daughter's decision.

    As a physically disabled child, Jerika lived a difficult life with grace and charm and chose to die the same way. If we are paying attention, we can learn so much from this lovely young woman and her courageous act of self-determination.

    By law, anyone has the right to accept or refuse medical treatment. The fact that Jerika, mature beyond her 14 years, was disabled and a minor changes the situation very little. She had every right to make an informed choice to end further medical treatment, but rather, to enter hospice and let her condition take its course. Children and adults with disabilities should be afforded the same respect that we would give anyone else. Her family was fully informed and, as hard a decision as it must have been to make, she made her decision with their support...

    Jerika was not terminal in the sense of being immediately terminal. She could have lived longer, but she, like so many who are "helped" with modern medical interventions, faced a future fraught with more pain and physical difficulties than most of us can imagine.

    Instead, in her own beautiful and decisive way, Jerika chose to "smell the roses," to have a party, enjoy her friends, spread joy in her world, raise awareness for Spinal Muscular Atrophy, and become a light for the rest of us who will have to find our own answers to our very personal life-and-death questions.

    End-of-life decisions are complex. We should all make these decisions thoughtfully, but also respect the decisions of others. At some point, many of us — just like Jerika — will choose to end the medical poking and prodding. Individuals across the country are making this very personal choice. It should be her right to make a choice to decline further medical intervention, even at 14...

    Julia Hanway [author of the above] is president of Hemlock Society of Florida, Inc., one of the oldest right-to-die organizations in the country. The purpose of the Hemlock Society of Florida is to promote Advance Directives, advocate for patients' rights and educate on right-to-die issues.