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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.

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BarbaraCoombsLee

BarbaraCoombsLee

Barbara Coombs Lee is President of Compassion & Choices, a non-profit organization dedicated to expanding and protecting the rights of the terminally ill. She practiced as a nurse and physician assistant for 25 years before beginning a career in law and health
policy.

Since then she has devoted her professional life to individual choice and empowerment in health care. As a private attorney, as counsel to the Oregon State Senate, as a managed care executive and finally as Chief Petitioner for Oregon’s Death with Dignity Act, she has championed initiatives that enable individuals to consider a full range of choices and be full participants in their health care decisions.

Ms. Lee took her undergraduate education at Vassar College and Cornell University and obtained advanced degrees in law and medicine from the University of Washington and Lewis & Clark College. She holds an adjunct position at the University of Washington School of Public Health and Preventative Medicine and is a member of the Oregon State Bar.

She has been interviewed by NBC News, CNN Crossfire, 60 Minutes, McNeil Lehrer News Hour, NPR, The Today Show, and Bill Moyers’ “On Death and Dying” among others. She has also testified before the US Congress on end-of-life issues.

She has been recognized with a national health Policy Fellowship, Boeringer Ingeheim Foundation, an American Jurisprudence Award for outstanding performance in the study of medical law and a National Health Lawyers Association scholarship for outstanding student achievement.

Ms. Coombs Lee has been a presenter at programs sponsored by American Bar Association, Older Women’s League, American Pain Society, Oregon State Bar, Americans for Better Care of The Dying, American Associations for the Advancement of Science, End of Life Concerns, and the American Pain Society. She spoke at the World Federation Right to Die conference in Zurich, Boston and Brussels.
Her audiences have included the Oregon Gerontological Association: the California Nurse Assembly & Education Conference. Her debate “Doctor Assisted Suicide: Compassionate Alternative or Murder” with James Bopp, Jr., was produced by “Justice Talking” a project of the University of Pennsylvania’s Annenberg Public Policy Center
for Public Radio.

Since Gonzales v. Oregon, the lawsuit defending the Oregon assisted-dying law, Ms. Coombs Lee has been interviewed by many of the nation’s newspapers. She has been quoted in the New York Times, The Washington Post, The Chicago Tribune, and on NPR’s All Things Considered. Recently, The Harvey M. Meyerhoff Lectures on Ethics at the End of Life hosted her presentation “Local Medical Practice and the Federal Threat” at Johns Hopkins University.