How to Get the Death You Want

By John Abraham

This is a comprehensive manual for anybody reaching the end of life, and for their caring friends, relatives, advocates, and caretakers. The author, an Episcopal priest, describes in detail the formidable challenges faced by those who wish to avoid months or years of painful treatment after they no longer have any hope of recovering any reasonable quality of life. Specific subjects include:

• the nature of physical death;
• legal documents to clarify one's wishes;
• the need for a strong advocate to have the patient's wishes honoed
• moral questions that must be considered;
• means of dying painlessly once the decision is made;
• and much more, including how to respond to reluctant doctors, and the value of humor in communicating with a dying patient.

Abraham emphasizes that despite is position as a priest, this is not a religious book. It is intended for people  of all faiths or no faith. People develop their own views on end-of-life issues, and for those who have not yet given it much thought, he offers facts and insights that are useful in forming one's moral beliefs. The decision, of course, must always  be made by the patient, usually well ahead of time while he or she is able to make a sound judgment. If the patient desires continued medical treatment despite suffering and no means of recovery, that person's wishes must be honored. However, he argues strongly that those who hope to avoid the terrible suffering that comes so often at the end of life should also have their wishes honored.

The book carries strong endorsements from a number of well-known authorities on death, dying, grief, and mourning, including Rabbi Earl A. Grollman, the author of numerous best-selling books on death and grieving, and Derek Humphry, founder of the Hemlock Society and author of Final Exit.

• Language: English
• Publisher: John Abraham
• Release date: Apr 1, 2017
• ISBN: 9798201752989

Book preview

Disclaimers

Opinions expressed in this book are those of the author, not reviewed for endorsement by any of the organizations referred to in the book or by the publisher, Upper Access Books. Legal and factual information has been carefully researched but cannot be guaranteed and cannot substitute for consultation with a lawyer, physician, or other expert who is knowledgeable about your specific circumstances.

Upper Access titles are available at special discounts for bulk purchases. Please contact the publisher to inquire. For such inquiries, contact Steve Carlson, [e-mail] , or 802-482-2988

Published by Upper Access Books

87 Upper Access Road

Hinesburg, Vermont 05461

802-482-2988 – www.upperaccess.com

Copyright © 2017 by John Abraham

All rights reserved. Brief quotations for review or analysis are welcomed, as long as full attribution is included. For permission for longer quotations or other use, contact the publisher.

Quoted works are copyrighted in the names of their quoted authors or other owners of the copyrights. Candle photo on cover copyright Prazis-123RF Stock Photo. All other photos and graphics owned by the author unless otherwise identified.

Design of cover and interior layout by Kitty Werner.

ISBN:978-0-942679-40-3

Library of Congress Cataloging-in-Publication Data

Printed on acid-free paper in the United States of America

Acknowledgments

Throughout my four decades of teaching death education, one salient factor stands out: I have learned far more than I ever taught. To my students, fellow supporters in the right-to-die movement (especially members of Final Exit Network), participants in my various workshops and classes, I am most grateful.

The dead teach this great lesson, which we are loathe to learn: we too will die.

-- John Updike

And I am grateful to others who have supported me, inspired me, encouraged me to take risks (Yes, I am a card-carrying member of The Giraffe Society for those who stick their necks out.), and helped me to think outside the box. A few who come to mind over the years are my parents, Maurice and Joan Abraham; The Reverend Doug Smith; The Right Reverend John Walker, Bishop of Washington, D.C.; The Reverend Jo Tartt, Jr.; Rabbi Earl Grollman; The Reverend John Fletcher; The Reverend Bill Wendt; and Derek Humphry. And it was the Bishop of Atlanta, The Right Reverend Bennett Sims, who when I consulted him about my having some conflict difficulties with a congregation assured me There is always hope. People die.

And I give thanks for J’Fleur and Tim Lohman, Steve Carlson, and Jeri Helen Belisle, who have been most supportive, been ever so patient, and greatly helped me to organize this effort.

Dedication

I dedicate this book to my beloved children, Katharine (Katie) and Paul. Both have endured life’s struggles and are now doing well. May they have life in all its fullness and prosper.

And I am grateful to all with whom I have worked in exploring death and dying, especially many who were near life’s end and taught me so much.

Contents

Disclaimers

Acknowledgments

Dedication

Foreword

by Douglas C. Smith

Introduction

Chapter 1.

What Is a Good Death?

Chapter 2.

Saying Goodbye: Communicating at the End of Life

Chapter 3.

Why I--and Some of My Colleagues--Became Involved in Death with Dignity

Chapter 4.

Playing God

Chapter 5.

Tools to Help You Explore Your Attitudes and Experiences with Death

Chapter 6.

The Death Taboo

Chapter 7.

Honoring Death by Recognizing its Benefits

Chapter 8.

Who Owns and Directs our Dying?

Chapter 9.

What You Need to Know about Advance Directives and Advocacy

Chapter 10.

Active Dying

Chapter 11.

Deliberate Life Completion: The Best Option For Many

Chapter 12.

How to Navigate a Medical Environment

Chapter 13.

Practical Steps When Preparing for Death

Chapter 14.

A Few Words on Grief

Chapter 15.

Some Concluding Thoughts

Epilogue:

Death and Humor

Appendix A.

A day to be Celebrated

Appendix B.

We Used to Die Better

Appendix C.

A Poem about My Cupboard

Appendix D.

A Physician’s View of Death with Dignity

Appendix E.

A Unitarian’s Essay about Avoidable Distress

Appendix F.

The Dementia Provision

Appendix G.

Physician Aid in Dying Does Not Go Far Enough

Appendix H.

Let Your Wishes be Known to Your Family

Appendix I.

Statement by Desmond Tutu

Appendix J.

Inter/Met Seminary

Appendix K.

Some Research about Good Death

Appendix L.

Euphemisms for Death

About The Author

Foreword

by Douglas C. Smith

Many people do not want to talk about death for a single minute. John has been talking about it, studying it, and writing about it for forty-five years. He knows about the subject from multiple directions and points of view, directions and points of view typically not explored by other authors. In those forty-five years of exploration (and I have known John for all forty-five of them) his knowledge has evolved and his passion around the topic of dying and death has grown in a particular direction: wanting everyone to be able to exercise just as much freedom in dying as they have in living. In How to Get the Death You Want, John, with all of his knowledge and his passion, shows all of us how we can have that freedom.

In this book, John not only shares his own wisdom, but also summarizes the wisdom of numerous physicians, psychotherapists, and other healthcare providers who are also experts in the field of caring for the terminally ill. In addition, his text is overflowing with poignant and relevant quotations from many other sources: from Walt Whitman to Kurt Vonnegut, from Sarah Bernhardt to Morgan Freeman, from Swami Satchidananda to the Dalai Lama to Episcopal Bishop John Spong.

Without sugarcoating anything, John tells it like it is, not skirting around any issues or avoiding any questions. In doing such, he makes How To Get The Death You Want not only an informative book but also a very practical one as well, giving practical advice for the dying, their families, their friends and their caregivers – from the moment of learning of the terminal diagnosis to the very moment of death.

John’s a very down-to-earth kind of guy. He doesn’t mess around with the trivial. He centers in on what’s really important, the meaty stuff, but he can do it with a sense of humor, not taking himself or the world too seriously. John has had to face life’s ups and downs, and he has done it as a survivor; and he has learned some things he can give to others to help them be survivors also.

For any of you who are willing to admit that you will die and/or willing to admit that someone you know will die, I recommend you read this book. There is information here I am sure you will want to know.

-- Douglas C. Smith, M. Div., MA, MS, author of The Tao of Dying; Caregiving: Hospice Proven Techniques for Healing Body and Soul; The Complete Book of Counseling the Dying and the Grieving.

Introduction

Whoever teaches people how to die, teaches them how to live!

--Michel de Montaigne

At the outset, please know that this is not a religious book. It is for people of all faiths or no faith. Despite my identification as an Episcopal Priest, I am no longer active in that capacity, and my work with the dying, their beliefs are important, not mine.

Might you suffer from Thanatophobia? Benjamin Franklin wrote in a 1789 letter that our new Constitution is now established, and has an appearance that promises permanency; but in this world nothing can be said to be certain, except death and taxes. Nearly three million Americans will die this year.

As a thanatologist, I have been working with issues of death and dying for over forty years. Thanatology is the study of death-related issues. The term comes from Greek mythology, wherein we find twin brothers Hypnos and Thanatos, respectively the Gods of sleep and of death. As John Steinbeck noted in The Grapes of Wrath, Death was a friend, and sleep was Death’s brother.

I regard death as a natural, rational, normal and inextricable part of life. We can’t have one without the other. This is my logo:

(Same picture: upside down)

For over a decade I have been teaching people how to get the death they want: explaining the difficulties of using advance directives and how to make sure their wishes are honored -- not just for end of life care, but at any time they are in a medical institution. This book is meant to convey and for you to gain the desideratum that I offer. I hope my learnings are conveyed in a sufficiently pellucid way.

I have been propounding comprehensive training to be an Advocate/Surrogate/Proxy/Agent/ Health Care Representative (different terms in different US states), discussing one’s rights and options, and providing resources to help the ill and those they love to be prepared for the inevitable: death. Many have learned how to protect themselves, their loved ones, and others at a critical time of life. Now you can learn this too. I believe that being equipped with and acting on this knowledge is one of the best gifts you can give yourself, your loved ones, and your survivors.

In this book I argue for the right to die: for us to be free to determine how our lives will be completed when an individual is faced with a future that holds no promise. And I argue that the way most of die these days is far from good. The tales of loved ones’ deaths that I hear are nothing short of heartbreaking.

This issue could not be more timely, as various media pay more and more attention to such consideration, and more states enact right-to-die legislation. (Such legislation does not go far enough, though, as you will learn as your read on.)

A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history.

--Mahatma Gandhi

We have tried to introduce such legislation in Arizona for the past twenty years. I have joined other advocates in pleading for the right to die before the Arizona Legislature on several occasions. Twice we even took busloads of our supporters to champion our cause, parading with signs and speaking with legislators. On one of our sojourns to the Arizona Capital Dr. Merlin Monte DuVal, the founder of the University of Arizona’s College of Medicine, accompanied me and put forth his argument that, since the state provides humane ways to execute criminals, it should also be able to open a Death With Dignity Center for those who desire a peaceful death. That was pretty bold.

If life is pain, one could say that killing is an act of compassion. I look forward to my own death, you know. But dying is like losing you virginity. You can only do it once. I’m saving it for the right moment.

--Amanda Steiger, Dark Geist

Now is the time for us to raise awareness of the right to die, especially as baby-boomers are becoming the aged. By 2030, an estimated 72 million Americans will be 65 or over, nearly one-fifth of the US population. (Newsweek magazine actually reported on April 4, 2016 that adult diaper sales are forecast to rise by 48% by 2020.). Our nation’s most populous state, California, granted the right to die to the terminally ill on June 9, 2016, becoming the fifth state to do so, and the media continue to raise the issue with ever greater frequency.

Some California hospitals have opted out of participating, claiming they cannot tell when someone will die. This is a specious argument if I ever heard one, since physicians have been pronouncing people terminally ill for decades as criteria for hospice admission. And there is a new front in the battle against death with dignity. Opponents are seeking to stop the laws in state courts after losing federal court cases filed in Oregon and Washington years ago. Now they are moving into state courts in California and Vermont, hoping they will get a different result. Make no mistake: the doctors and the anti-choice groups funding these lawsuits are political operatives attempting to derail the laws any way they can.

In spite of the grandeur of Washington DC’s Episcopal National Cathedral, or the majesty of many European cathedrals I have visited, I may echo the words of Jerome Lawrence who, in his play Inherit the Wind proclaimed that an idea is a greater monument than a cathedral. My idea is that the right to hasten one’s death is the next great civil right.

Seeking some corroboration, in July of 2016 I emailed my friend, Morris Dees, the co-founder and chief trial counsel for the Southern Poverty Law Center, asking him whether he would endorse a statement that in the 21st century, we might add the Right to a Death with Dignity to the other ongoing struggles of recent decades—women’s rights, racial rights, disability rights, and LGBT rights. He responded that he is happy to endorse the statement of the Right to Death with Dignity.

Retired University of Arizona professor and fellow Final Exit Network member Timothy Lohman, who reviewed my early manuscript, says that this book is unique in five ways.

Details on the steps after death of loved one from day 1 to one year: a great resource.

Why death is needed and the benefits: this aspect is rarely addressed.

How best to die: deliberate life completion. We rarely get good advice in this area.

Having an advocate: it is one thing to have all your wishes stated and filled out and on file…quite another to get them acted on. We all need an advocate at critical times in our dying process and John spells out all the details of what this entails.

Comprehensive perspective on the preparation for end of life from an experienced Thanatologist with so many examples of what is in store for each of us!

My Background

My father was from England, and our family would visit his family members there regularly as well as tour throughout Europe. In England and elsewhere in Europe there were hospices long before any existed in the United States. Their idea of palliative care and easing the dying process made so much sense to me even as a youngster, I wondered why we didn’t have it in this country.

So, in my early twenties, I helped start the third hospice in the US in the mid-1970s in the Washington, D.C. area. Shortly thereafter, when I became pastor of a church near Montgomery, Alabama, I joined with Wanda Ruffin, a compassionate registered nurse, to found Hospice of Montgomery. The community was quite receptive to the concept and subsequently I did quite a bit of hospice training and consulting with fledgling hospices in several states. I have served hospices as president and in many other roles.

Hospice practices have changed significantly since we got started in Alabama. For example, Medicare did not pay for it then, and now one can get coverage for some medical interventions that were not permitted before.

I have seen virtually all manner of death and have simply seen too many people die badly. One of my first experiences with watching a person die was when I was twenty-seven. A young parishioner, Robert, was in intensive care after a horrific motorcycle accident. He was in his late twenties and barely clinging to life; severely battered and bandaged, with what seemed like endless tubes out of every orifice and several veins. He was drugged and plugged to the hilt, and his countenance was most disturbing. I remember well that when I saw him for the first time, upon leaving the hospital I did not get twenty feet beyond the exit before shaking and crying. His predicament was just too close to home; he was about my age, and I rode motorcycles in those days. I did not have the privilege of being with Robert when he died, but it was within a week of hospitalization. About twenty percent of us will end up in an intensive care unit at the end of life, and of those, about one-fourth will die there.

About a year after my experience with Robert’s death I saw an elderly woman in the hospital who pleaded with me to help her die. She was suffering greatly, had led a good life, and just wanted out. At the time, there was nothing I could do to honor her wish. It turns out that these days if someone in a hospital tells a staff person that they want to die, they are largely ignored. It is anathema to most hospital personnel to let or to help someone die. Some think the person does not really mean what they’re saying, or they just do not know how to reply.

Stephen P. Kiernan, the author of Last Rights: Rescuing the End of Life From the Medical System, says: We found that health care professionals commonly did not respond to statements about wanting to die because they were worried they would say the wrong thing and further upset the patient, or because they were worried about professional or legal sanctions.

My experience as an Episcopal priest led me to believe that I would never want to suffer the way I saw so many people die: in isolation, abandoned and with great existential suffering. I would never want to be in an intensive care unit, hooked up to all kinds of machines. As a result, I began to look for a good way to die, knowing full well that dying is inevitable. Fortunately I met Derek Humphry in the late 1970s, joined the Hemlock Society in its first year of existence, and have been committed to helping others obtain a death with dignity ever since.

Although I am not an Exit Guide with Final Exit Network, I have been present for half a dozen exits by people using the helium method. They obtained the kind of death they wanted. And I have a friend who has been present with over two hundred such deaths. Both he and I would have to describe these experiences as both a privilege and a gift, because we are privileged that these people trust us, and we can be there with them and their family to witness such a significant event in their lives. It has meant that they should not have to die alone or miserable!

Having been raised in the Episcopal Church and having found it to be a good experience, I enrolled at Virginia Theological Seminary (VTS) in 1969. I was not enamored with it, but I stuck it out at VTS as a means to an end, and during the summer after my first year there I did six weeks of study at the Mid-Atlantic Career Center. This institution was not the kind of career center where at the end they pronounce you should be hairdresser. It entailed a thorough inventory of my life’s experiences with great emphasis on both enjoyments and accomplishments. My conclusion was that I would enjoy and be good at being an Episcopal priest. I enjoyed my chosen occupation. As for being good at it, you would have to ask others.

During seminary I had the good fortune of doing my field work with St. Stephen and the Incarnation Episcopal Church in Washington, D.C. under the direction and tutelage of The Reverend William (Bill) Wendt. The parish theme was Celebrate Life, which is how I regard my involvement with death. To study death and dying may sound morbid. But truly my interest in this unusual topic is about making the most of the