The New Mexico Compassion & Choices chapter has asked for stories from those who have watched a parent or other loved one endure an end of life situation in which physician aid in dying would have been desirable. What follows is my "Amicus Brief" explaining why I support "physician aid in dying."
My mother died in 2007 at age 75 of Multiple Systems Atrophy
(MSA), a neurodegenerative disease from which she had suffered for almost 10
years. MSA initially presents with Parkinsonian symptoms, but quickly differentiates
itself by the patient’s rapid deterioration and non-responsiveness to dopamine
treatment. Eventually, my mom could not move voluntarily, with the exception of
blinking her eyes and moving her index finger. She could still speak, but only
with tremendous effort. Swallowing was extremely difficult; earlier, she had
made it clear she did not want a feeding tube, but somehow, near the end, after
she could no longer voice her wishes, she was fitted with a feeding tube.
With the exception of a few hospital stays and respite care,
my mother lived at home with her husband. They hired
a young woman who devoted herself to helping my mother be comfortable at home.
Toward the end of my mother’s life, this young woman moved into the home so she
could be there to assist my mother 24/7.
Traveling from New Mexico, I regularly visited my mother in Las Vegas, NV during those
years. At first, I would take my mother (and her walker,
then wheelchair) to the mall, doctors' appointments, and restaurants; we would
enjoy our conversations. Later, she became house-bound, and was ultimately admitted
to hospice care in 2002. Her vital organs and her mind were properly
functioning, but her brain was no longer transmitting dopamine, and her body
became rigid. Her head was permanently angled to the left and down, her neck
twisted unnaturally and uncomfortably.
One day, when I was alone with my mom in her bedroom, she
cleared her throat to speak. I leaned in closely. She said quite clearly, “If I were a dog,
you would have put me down already.” She was right. Had she been the beloved
family pet instead of its human matriarch, we would have wrapped her in a
blanket, put her lovingly in the car, and taken her to the vet for a humane exit.
Yet that option was available neither to us nor to her doctors. She lingered in
pain and dismay for another several years.
The last time I saw my mother,
months before she died, I had the opportunity once again to be alone with her,
by her bedside. I held her hand while she alternately slept and stared (she no
longer had a normal facial affect). Then suddenly she made eye contact with me,
squeezed my hand, and began to speak. She attempted some words that I couldn’t
understand. I was imagining some sort of profound “last words,” though we had
long ago said our “I love you’s.” I put my ear to her lips and heard her say,
“Wipe…my…nose.” I looked at her face; sure enough, her left nostril was
draining clear liquid onto her lip. I grabbed a tissue from the nightstand and
wiped her nose. Those were her last words to me.
I was not with her when she died.
She turned blue in the back seat of the car on the way to the hospital. I don’t
recall the exact circumstances—why her husband and not an ambulance was
transporting her—but I am grateful that she died before anyone had the
opportunity to intervene and prolong her end-of-life agony.
I wished then, and continue to
wish now, that her doctors had been able to aid her in dying well. As it was,
they could treat only her symptoms, and, like the rest of us, watch her suffer.
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