When I decided [to die], I felt extremely happy and sad at the same time

July 15, 2016 2:30 PM

"But for her power wheelchair, Jerika Bolen is every bit an active 14-year-old girl – a hopeless romantic with shiny purple hair, a love of alternative music and an addiction to Facebook. She has a maturity and wisdom that belies her age, and on a recent spring day, as other 14-year-olds were finishing their final year of middle school and making summer plans, Jerika told her mother she was ready to die."
posted by AFABulous (13 comments total)

Really heart-breaking, but I'm glad that everyone is standing behind her choice even though it's painful for them.
posted by tavella at 2:34 PM on July 15, 2016 [8 favorites]

Is there a medical reason to put her on morphine and switch off the ventilator, rather than putting something other than oxygen through it to prevent the "starved for air" experience? I'm so proud of her and her family for making the choice that's best for them, and I just wonder if this could be made easier, quicker, more peaceful. It's so stressful watching someone gasp for air, even if they aren't in pain, and I can't even imagine that being your child.
posted by zinful at 2:50 PM on July 15, 2016 [8 favorites]

It appears that Wisconsin makes a legal distinction between euthanasia and withholding life support. Presumably that has something to do with the reasoning here.

This is tough stuff.
posted by Wretch729 at 2:53 PM on July 15, 2016 [10 favorites]

Yikes. That sounds really hard for all concerned. Jerika sounds like one kick-ass teen. Her mom has a lot to be proud of but I donut imagine she'll be able to feel that until a gazillion hours of grief work.
posted by Bella Donna at 2:55 PM on July 15, 2016 [9 favorites]

Is there a medical reason to put her on morphine and switch off the ventilator, rather than putting something other than oxygen through it to prevent the "starved for air" experience?

That's what the morphine is for -- it reduces respiratory drive so that even though she won't be able to get as much oxygen, she won't feel the distress typically associated with difficulty breathing. It's not just a painkiller in this context, it has a very specific function well-suited to the situation. There's nothing I'm aware of that you could put through the ventilator that would satisfy the drive for oxygen without directly killing the patient.

Wretch is correct that this is the plan because care may legally be withdrawn or withheld but physician assisted suicide is not legal in Wisconsin.
posted by telegraph at 6:23 PM on July 15, 2016 [19 favorites]

I was thinking about how awesome her prom is going to be and I finally realized the meaning of the phrase, "live each day as if it's your last."
posted by bendy at 7:09 PM on July 15, 2016 [4 favorites]

A distant cousin died when we were both 16. She had a rare disorder and a bone marrow transplant didn't work. She was in the hospital for about the last month of her life. And it was always eerie to me how cheerful and peaceful she was. I'm sure her strong religious beliefs played a big part in that but it's still hard to comprehend.

I sat with my grandmother when she was taken off the ventilator and given morphine until she died. That was much easier to watch then her moaning "I want to die" over and over while she was on the ventilator. Of course, she was in her 80s and not a teenager, but I always thought I'd go down swinging and I guess you can't really know.
posted by AFABulous at 8:38 PM on July 15, 2016

There's nothing I'm aware of that you could put through the ventilator that would satisfy the drive for oxygen without directly killing the patient.

Though it may be moot under the circumstances, humans have no drive for oxygen, and we cannot sense reduced oxygen intake (some diving mammals can). The sensation we associate with asphyxiation is the "hypercapnic alarm response" caused by elevated carbon dioxide in the blood. This is why suicide by inert gas asphyxiation (the Final Exit suicide bag) is so effective--in an oxygen-free inert gas atmosphere breathing still effectively clears CO₂.
posted by pullayup at 9:04 PM on July 15, 2016 [23 favorites]

Thanks, good to know.
posted by the quidnunc kid at 9:24 PM on July 15, 2016

It can be difficult to gauge and predict life expectancy or quality of life among people with spinal muscular atrophy. My good friend Alice Wong has this condition and is a major thinker and leader for people with disabilities. Here she is meeting President Obama. I think it is important to be connected to other people with disabilities.
posted by ClaudiaCenter at 11:13 PM on July 15, 2016 [2 favorites]

I think it's important to have a supportive family (born or made) and doctors who listen to your choices. Whether or not those people include other people with disabilities, well, that's up to the person in question. They are not their disability; they won't automatically be friends with other people with the same symptoms.
posted by tavella at 12:09 PM on July 17, 2016

I am disgusted that this brave young woman cannot simply be given a painless lethal injection. My cat was given a painless lethal injection! Why in the hell can we not provide for an ailing human?
posted by kittens for breakfast at 3:48 PM on July 17, 2016 [2 favorites]

March 2015 article on Jerika and adaptive sports. I hope she and her mom find effective strategies for the pain and reconsider.
posted by ClaudiaCenter at 12:12 AM on July 18, 2016