Jerika Bolen, a 14-year-old girl with Spinal Muscular Atrophy Type 2, has been allowed to end her life— her own decision—by having her ventilator disconnected. She died Thursday.
Jerika had told her mother that her chronic pain, along with her very significant physical limitations (including relying on a power wheelchair), made her welcome the idea of death.
Jerika clearly was no coward. She had endured more than 30 surgeries for her condition since being diagnosed at eight months of age. Her family made it possible for her to enjoy movies, fireworks, sleepovers and a community-wide “last dance” prom this summer, before her ventilator was turned off.
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.
First, there is the matter of a bit of cognitive dissonance here: If a young woman can enjoy movies, fireworks, sleepovers and a prom prior to her assisted suicide, was it truly and utterly impossible to inspire her to persevere and look forward to other possible joys?
I believe we are always on thin ice when we collaborate with death.
Might Jerika have signed on with the notion of one more year in which a writer would pen an autobiography with her?
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?
Might she have been moved, by the right voice, to see that confronting and enduring her pain might be a shining beacon to all those who encounter adversity of any kind?
Second, there is the matter of Jerika’s reportedly unbearable physical and psychological pain. I don’t have access to her medical records, but I would wonder to what extent creative methods of pain control and mood enhancement—including even methadone or marijuana or ketamine (a truly miraculous antidepressant and pain medicine)—were employed. Because if they were not, I would argue that they should have been.
Third, without casting doubt upon or criticizing anyone involved, 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.
I worry about the infirm and elderly people who might raise the question of euthanasia with their loved ones, to spare those others stress and financial hardship, while secretly hoping that their requests are greeted with an absolute, “No, never.”
Fourth, the fact that doctors did not stop this euthanasia should crack the foundation of public confidence in the medical profession. Because once doctors start offering not only to save people from death, but also to facilitate it, they open the door to untold pressures to not prolong life “unnecessarily,” when, for example, the economic costs of doing so are “unreasonable.”
I simply do not believe that euthanasia or assisted suicide, once indulged by society, will remain at the sole and unencumbered discretion of the person deciding to live or die.
Family members and hospital administrators and insurers and legislators will, ultimately, be looking for a seat at the bedside of those who they will quietly suggest “should” consider dying.
Think about this: If society embraces the notion that we should celebrate the “decision” by a 14-year-old to end her life, then why would society not, ultimately, look askance at those who decide that their children should continue living when they have been born with incurable illnesses.
Why would government fund new treatments, at astronomical expense, for people who “ought” to consider moving on?
See, I believe we are always on thin ice when we collaborate with death. It unavoidably erodes our individual and collective respect for human life and for the infinite, immeasurable, unpredictable ways in which God responds when human beings show extreme commitment to their hopes for a better day.