Better English long read: The girl who chose to die

Better English long read: The girl who chose to die

Have we finally come to accept that it's okay to give up on life?

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Jerika Bolen decided enough was enough.
Courtesy of Jerika Bolen

More than a decade ago, Americans took sides in a bitter, battle over the right to die. We watched as Terry Schiavo’s family fought over what they believed were the Florida woman’s wishes.

But, as the world watched the final days of Jerika Bolen, a Wisconsin teenager who decided to stop medical treatment for an incurable disease, a different drama unfolded: Jerika threw herself a goodbye party - and many, many people were cheering.

Have we turned a corner [changed, usually for the better] on this fraught [stressful] issue over the past 11 years?

Medical ethicists say: Not so fast.

Schiavo's case was different

As painful as Jerika’s case is, hers is not like Terry Schiavo’s, whose medical drama dragged on for years, ensnaring [trapping] 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 [with no higher brain function, only being kept alive by machines] until her death in 2005, divided the USA and hardened many Americans’ positions on the "right to death," as well as religious objections to doctor-assisted suicide.

Doctors said Terry Schiavo, right, was basically brain dead. Her parents disagreed.
Photo: Associated Press

At the time she was taken to hospital, 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 [believed] she would benefit from rehabilitation [help from therapists]. A long fight followed - President Bush even signed a bill allowing a federal court to intervene [step in] in the case.

Schiavo died at age 41 at a Florida hospice [a home for dying people] after a 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 [unusual], "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 [views] - her family was Catholic, and part of the dilemma [ a situation in which a difficult decision has to be made] involved caregivers trying to figure out if she still considered herself a Catholic and thus would oppose ending her own life.


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Paul J. Ford, director of the NeuroEthics Program at Cleveland Clinic, said Jerika's case seemed closer to those of cancer patients who reject treatments such as chemotherapy because of uncertain success rates and high toxicities [poisons].

Ford also compared Jerika’s case to that of Brittany Maynard, the 29-year-old diagnosed with a malignant [doing harm] brain tumour 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 [a kind of brain tumour] 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] was doing that.”

He said Jerika earned a real measure of respect for her suffering, which included nearly 40 surgeries. "She has worked so hard and has been cared for so well and is pretty articulate [having the ability to speak fluently and sensibly]. This isn’t somebody who just got a diagnosis [found out what's wrong] and gave up."

Disability rights groups tried to intervene in Jerika’s case. Carrie Ann Lucas of the Colorado-based Disabled Parents Rights said her organisation is one of several that asked for child-protection authorities to investigate [look into something].

"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 said.

Jerika Bolen gets her hair and makeup done before her prom on July 22.
Photo: Associated Press

Jerika's decision to enter hospice care in September gained national attention after she and her mother, Jen Bolen, said the girl would forego [go without] a ventilator [a machine to help her breathe] at that time, essentially [basically] scheduling [planning or arranging] her own death.

Jerika suffered from Spinal Muscular Atrophy Type 2, often referred to as SMA. It's an incurable disease that has left her in constant [not stopping] pain - on her best days, she said, she was at seven on a 10-point scale. SMA destroys nerve cells in the brain stem and spinal cord that control voluntary muscle activity. She said that the pain - and the need for more invasive medical interventions [surgeries] - will only grow as her body continued to deteriorate [get worse].

Jerika was diagnosed as a baby and has never walked. At 14, her movement was 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, which they called "Jerika’s Last Dance," in July.

Lucas said her organization was 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 needed mental health care, not help ending her life.

Ford, the Cleveland Clinic ethicist, said Jerika’s case is "pretty compelling," partially [in part] because the teenager has publicly articulated so clearly what she has been through and how she felt.


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"She had 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 criticise someone who might say, "Keep fighting," Ford said, "But it’s also hard to criticise her for saying, 'I’ve fought this hard. Now’s the time when you need to let the disease take its course [happen without interference]."

Caplan said Americans were "slowly accepting - very slowly - assistance [help] in dying," and are more widely beginning to accept the right to stop treatment. He noted that only four states recognise a person’s right to die [the idea that someone can choose to not have medical treatment, or to take drugs that will kill them], 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 [do something faster] your death. … That shows a kind of division of opinion around the country about how to manage dying, which is important."

Looking for a party, Jerika Bolen died on her own terms.
Courtesy of Jerika Bolen

Public opinion on the topic is evolving [becoming more advanced], 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 per cent said doctors should do "everything possible." By 2013, that figure had doubled to 31 per cent.

But about two-thirds of US. 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 [not simple] 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 [sign] 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 [would change] 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.”

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