Right to Die: Some Thoughts and Recommendations
by Dennis McClellan
I read with interest your review of Unplugged: The Right to Die in America. This has been a subject of interest to me ever since I watched my mother slowly suffer over a fifteen year period before losing strength and dying in her sleep.
There is a book that I've read and recommended by a survivor of ALS (nearly sixteen years), named Bob Horn, entitled Who's Right? (Whose Right?): Seeking Answers and Dignity in the Debate Over the Right to Die.
Horn, a college professor in Northridge, CA, eventually became completely paralyzed from the ALS. He was unable to breathe, eat, move, or speak. Yet he communicated through a coding system (using one of his eyes) that his family created in the years before he lost his speech. He also was able to manipulate the mouse on a computer with a pulse from a nerve on top of one foot (believe it or not). With that skill he actually "wrote" two books, one letter at a time. Who's Right? was his second and last book.
He wanted to give voice to both sides in the controversy over one's right to decide upon life or death. Bob never wanted to die. He thought he had too much to offer and too many thoughts to share. And so he drove himself (unmoving as he was) to communicate his thoughts through words on a page and through the words of other contributors. His book provides insight from all manner of voices: C. Everett Koop, MD and former U.S. Surgeon General, Derek Humphry who founded the Hemlock Society, Dr. Herbert Hendin of the American Foundation for Suicide Prevention,Judith Beay, R.N., Myrna Tashner, Ed.D. (a psychologist and hospice chaplain), Dax Cowert, J.D. (a survivor on severe total-body burns), Helynn Hoff (post-polio syndrome survivor), Cynthia St. John, Ex. Director of Dying with Dignity, and many other contributors. Bottom line of the book: the choice is yours. You've survived illness, disease, pain, paralysis, emotional distress, and much more. You've given it your all. Individuals should persist in their desire to live, but respected when it comes to their decisions on death with dignity.
A postscript to Bob Horn's story:
He survived for a long time with ALS. He was a happy man much of the time. He got to see his first grandchild just before pneumonia finally took over his lungs. As discussed and validated over the years, Bob was admitted to a local hospital, his pneumonia diagnosed and his fate determined. With his family by his side, he was disconnected from his breathing tube and was allowed to die per his wishes. His funeral in Northridge Methodist Church was so crowded that there was only standing room and an overflow of attendees extended outside
I highly recommend Who's Right? for its "objective" presentation.
In addition, if people want to avoid an incident in their lives like that experience by the family of Terri Schiavo experience, Unplugged most surely will prove of value.
If, on the other hand, you or someone close to you may live for years in the hands of caregivers, wouldn't you want to be cared for as you desire -- not as others may decide? There is a book that can be of tremendous value to you, your spouse, your adult children, friends, and relatives. It is entitled: Who Cares? A Loving Guide for My Future Caregivers.
A new, second edition of this book just came out and it is truly wonderful. Everything you want "others" to know about you and what you expect when you are being cared for can be found in this book -- which you create in your own words. It is a guidebook that allows you to put into your own words the directives and important information about yourself that will "help" others care for you in a manner you desire -- even if you can't speak for yourself.
I've used the book, my wife has completed a copy, and my adult children have copies they've completed. If something were to happen to one of us and we were alone, paramedics would find the book, along with my medications (something paramedics always need to know about when responding), where I keep my car keys. Immediately the book will provide critical information about me and my health -- if I'm unable to respond and there is no one there to speak for me. Like the other title, I highly recommend this book for all adults.
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