End-of-Life Choice, Palliative Care and Counseling

Posts TaggedPersis Oberreither

National Healthcare Decisions Day: Amy’s Story

Compassion & Choices member Persis Oberreither, by completing an advance directive, inspired her teenage daughter to do the same. Here she tells of the heartbreak – and comfort – of honoring her daughter’s wishes.

AMY’S STORY

In recognition of National Healthcare Decisions Day, I want to share with you my first-hand knowledge of the incalculable importance of having an advance directive, and of discussing your feelings about end-of-life matters with the people you love and trust.

My eighteen-year-old daughter and only child, Amy, was involved in a car accident in 2001. She survived the accident but sustained a devastating brain injury. As she lay unconscious on full life support in the intensive care unit, her neurosurgeon informed me that Amy’s head injury was “…as bad as it gets.” Later, he added, “I’m flabbergasted she’s still alive.”

Amy remained unconscious for three weeks before her father and I requested that the machines supporting her life be disconnected. Our beloved daughter died two hours later.

In truth, it was Amy herself who made that request. She asked me six months before her accident what a living will was, now referred to as an advance directive for healthcare. Amy had found me sitting at our dining room table one afternoon, reviewing the living will that I’d drawn up for myself, the pages having been signed, witnessed and notarized at my attorney’s office earlier that day. When I explained to her that having a living will “lets you keep control over your own life should something terrible happen and you wind up in a coma in the hospital or something”; that having a living will “makes your life your decision and prevents (I phrased this in a way an eighteen-year-old could relate to) a bunch of ‘fundamentalist crusading yahoos’ from gaining control over you through the courts,” Amy then asked,

“Can I have one for myself?”

“Absolutely,” I said.

You never know.

It was understandable why having an advance directive that would ensure her dignity and quality of life up to the end had become of utmost importance to Amy. She had borne witness to the long, terrible suffering of her beloved grandmother: her dear friend –ravaged by Parkinson’s disease; her dear friend – no longer able to walk or talk or feed herself; her dear friend – no longer able to recognize the people she loved.

It was due to the love and compassion that she felt for her grandmother that Amy became the kid who got into trouble in religion class, senior year of high school, for expressing her support and approval of the efforts of Dr. Jack Kevorkian.

When I finally came to understand that the life Amy had so emphatically expressed to me she wanted and needed and deserved – a life of independence and self-determination, the life we all want and need and deserve – was forever out of her reach, I, as her durable power of attorney, turned over her advance directive to the hospital staff. I knew that Amy was counting on me to speak her mind for her. I did what she asked.

Honoring Amy’s wishes by allowing her to die was…is…well…hard beyond description by the spoken or written word. But as I struggle to endure my grief and loss, I have peace of mind in knowing that what I did for Amy was right.

I encourage you to do this loving thing for the people you love: Children, talk to your parents about their end-of-life wishes. Parents, talk to your children if they are eighteen or older about their end-of-life wishes. Fill out your advance directives as a family. Re-initiate the conversation every so often. Because Amy’s story could someday be your story.

You never know.

Persis Oberreither graduated from Miami University 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 from pinkyswearamy.com/purchase/.

To obtain copies of your state-specific advance directives, and to learn ways of getting the conversation started, please go to compassionandchoices.org/G2G for information.

Amy’s Story

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.