Thursday, February 14, 2013

Compassion & Choices

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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