End-of-Life Choice, Palliative Care and Counseling

Amy’s Storyby Sonja

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By Persis Oberreither, a Compassion & Choices member and author of Pinky-Swear: Honoring My Daughter’s Right to Die, talks about the important conversations about end-of-life choice she had with her daughter, Amy.

Amy and my mother were very close, even though my parents lived more than five hundred miles away. Amy and I would make the trip to visit them a couple of times a year, and she and my mother had become the best of friends. By the time Amy turned sixteen, my mother was suffering terribly in the grip of end-stage Parkinson’s disease. She could barely walk or talk. She needed someone to feed her. She was confused most of the time.

Amy was heartbroken to see that her beloved grandmother’s quality of life had so diminished. After leaving my parents’ apartment one evening, Amy said to me, “Promise me that you’ll never make me live like that.” I promised. Then she grabbed my arm and pleaded, “No, Mom. Really promise me.” We hooked little fingers in a “pinky swear” that I would honor her wishes.

A couple of years later, Amy found me sitting at our dining room table one afternoon reviewing my living will, as it was called at the time. She asked me what it was, and I explained to her that having a living will allows you to keep control over your own health care decisions if ever you can’t speak for yourself. Amy emphatically expressed her desire to have her own living will, so within a week or two, we had one drawn up for her.

Six months later, Amy was in a horrific car accident and sustained a devastating brain injury. The night of her accident, as she lay in the intensive care unit on full life support, the nurse asked me if Amy had a living will. When I told her she did, the nurse’s jaw dropped. She said she’d never known of an eighteen-year-old with a living will.

It goes without saying that Amy’s dad and I were very hopeful Amy would not only survive but would eventually recover the basic quality of life that she so required. But it wasn’t to be. Amy’s neurosurgeon had worn a grim expression as he delivered the news to us that Amy would live. From there, over a period of weeks, her condition deteriorated. She was destined to live, with no life.

My ability to do the right thing for Amy by honoring her wishes and allowing her to die was contingent, first of all, on my knowing exactly what her feelings were regarding quality of life; what she needed me to do if such a tragedy as this ever struck.

Secondly…I had to love her that much.

Persis Oberreither graduated from Miami University (Ohio) with a degree in philosophy, worked as a paramedic, and was a stay-at-home mom while Amy was growing up. After Amy’s death, Persis wrote Pinky-Swear: Honoring My Daughter’s Right to Die, and has worked as a hospice volunteer. She is a member of Compassion & Choices, Bereaved Parents of the USA, and St. Paul’s Lutheran Church. Her book can be ordered here through our online bookstore.

People of any age can let their loved ones know the treatment choices they would want if they were unable to express them. Download an advance directive/living will here.