While so many of us have been in a whirl wind of
Nutcrackers, wrapping paper, and top ten lists of 2013, the family of 13-year-old
Jahi McMath are facing the withdrawal of their daughter from life support. The
Northern California girl suffered complications following a tonsillectomy, and
two doctors have ruled her brain dead. I have been following her case with
interest and sadness.
Jahi’s lungs and heart continue to function artificially
because of a ventilator. The machine maintains her breathing which sustains a
heartbeat. Doctors assert that with no brain activity at all, the girl would be
unable to breathe on her own.
On a dark January day when I was 27 years old, my mom was
placed on a similar respiratory life support. I had been an adult for some
time. I owned a house, a truck, established a career and could drink right out
of the milk carton if I wanted. In all of my adultness, I was nowhere near
mature enough to address the questions before me. Mom had no living will.
Jahi and my mom’s scenarios are different in two critical
ways. First, Jahi is a minor and her parents are unequivocally in charge of
decisions regarding her medical care. My heart is heavy for their impending
loss and upcoming decisions which are compounded by their disagreement with
doctors about her prognosis.The second stark difference between my mother’s and Jahi’s hospitalization is that my mom wasn’t declared brain dead. Her lungs and heart were failing, but her brain activity on the monitors lit up the hospital room. Winter inversions and air pollutants on top of her years of smoking culminated just after New Year’s Day in 2000 when this nightmare began.
A doctor asked me about a living will. He was understandably
exasperated when I said that she did not have one. I asked Mom throughout her
terminal illness to write one as well as a general will, but she cut me off and
refused to discuss it past a few excuses.
She didn’t want to spend the money on attorney’s fees. I was her only heir, so there shouldn’t be
any questions. She was an atheist who didn’t believe in an afterlife so she
wanted to be hooked up to any and every machine indefinitely. Her wonderful
life on this earth was it and she wanted to extend it as long as possible. End
of discussion.
Since Mom had been verbally clear with me about her wishes,
I told her medical team that despite any of their professional opinions about
the heartiness of her heart and lungs, there was no point in further
conversation.
The doctors continued a regimen of breathing treatments, medicine
and tweaking the ventilator settings while Mom remained unconscious in the ICU.
I would visit her in the morning before work, at lunch and then I’d sit with
her at night and watch TV.
On the fifteenth day when I walked into her room before work,
she was sitting up and watching Good Morning, America. It scared the heck out
of me. I thought for an instant I was going mad. I couldn’t possibly trust my
eyes. She had a breathing mask on and cheerily turned and waved with an
atrophied, misshapen hand.
Her voice was raspy because she’d had a tube in her throat
for so long, but indeed her brain was churning. She told me I was going to be
late for work and wanted an update on her Green Bay Packers and Chicago Bears. My Decembers are flooded with birthday and Christmas gifts, but the best gift I ever received began that January. I got another entire year to the day with my mom after her fifteen days on life support. She gave me another present in the months that followed in a notarized living will.
There is no better time than the present to establish a living will, and making those decisions so your loved ones don’t have to is truly a gift. I had been skeptical of life support means and success before my mom’s experience, but those days persuaded me. I have outlined in my living will that I can be on life support for no more than fifteen days.
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