A comprehensive manual for those reaching the end of life, and for their friends, relatives, advocates, and caretakers. Abraham describes in detail the challenges faced by those who wish to avoid months or years of painful treatment after losing hope of ever recovering any reasonable quality of life.
♦ the nature of physical death;
♦ legal documents to clarify one’s wishes;
♦ the need for a strong advocate to have the patient’s wishes honored;
♦ moral issues 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.
An Episcopal priest and thanatologist, John Abraham has devoted most of his adult life as a pioneer in the fields of grief therapy, hospice, death education, and, more controversially, the right-to-die movement.
This book is a product of those years of experience. Rabbi Earl A. Grollman, perhaps America’s best-known authority of death education and grief therapy, comments that “Whatever your opinions on the right-to-die movement, this is a book you must have in your library.”
Abraham is also well-known for his sometimes unconventional sense of humor; which makes it easier for people to become educated on a serious subject, to be better prepared for their own eventual deaths and to advocate for their loved ones at the end of life.
John is a graduate of The Peddie School, Colgate University, and Virginia Theological Seminary and a lifetime member of The Association for Death Education and Counseling through which he earned his advanced certification as a Fellow in Thanatology. He is also a lifetime member of all U.S. right-to-die organizations and has served with numerous groups long championing minorities and the underdog.
His primary avocations are reading, tennis, and — having enjoyed about a dozen motorcycles — he recently gave up riding a “suicycle.” The Reverend Abraham frequently gives talks and workshops on issues relating to death, grief, and the right-to-die movement. His personal Web site is www.JohnLAbraham.com.
Foreword by Douglas C. Smith
Chapter 1. What Is a Good Death?
Only you can decide what kind of death you prefer. Here are some issues to consider.
Chapter 2. Saying Goodbye: Communicating at the End of Life.
How to communicate with a dying person. What to say or not to say. Recognizing the person’s spiritual beliefs. And don’t forget, most dying people still have a sense of humor.
Chapter 3. Why I — and Some of My Colleagues — Became Involved in Death with Dignity
Several advocates (including me) describe why we devote time and effort to this important civil right.
Chapter 4. Playing God
Most arguments against the right to die are based on religious beliefs. But many prominent religious leaders support the right of a dying patient to relieve suffering and hasten one’s own death.
Chapter 5. Tools to Help You Explore Your Attitudes and Experiences
Most people have not spent much time thinking about death. These tools may help to clarify your thoughts, taking stock of your personal experiences in encountering death.
Chapter 6. The Death Taboo
Don’t avoid the “D” word. We need to discuss death directly, not with euphemisms. The importance of death education, including education of children.
Chapter 7. Honoring Death by Recognizing its Benefits
Life couldn’t exist without death. If you think through the benefits, you may find it easier to accept.
Chapter 8. Who Owns and Directs our Dying?
Most doctors prefer a dignified death for themselves, but are often reluctant to allow it for their patients.
Chapter 9. What You Need to Know about Advance Directives and Advocacy
In order to have your wishes followed, you must first make clear what your wishes are, under a broad range of possible circumstances. You will also need a strong and effective advocate. These preparations can be complicated.
Chapter 10. Active Dying
Know when someone is, in fact, near death by learning the signs of pre-active and active dying.
Chapter 11. Deliberate Life Completion
Why this is the best option for many. Neither I, nor anybody in Final Exit Network, will encourage you to make this choice but will support your right to do so. Discussion of several methods of avoiding pain, including inert gas such as helium.
Chapter 12. How to Navigate a Medical Environment
Even for routine procedures, hospitals and other medical institutions can be difficult to deal with. End-of-life care can present far greater challenges for patients and their advocates, particularly when physicians disagree with your choices.
Chapter 13. Practical Steps When Preparing for Death
A “death checklist” cannot, by its nature, be warm and fuzzy. But this detailed listing of steps that may need to be taken before and after death can make the process proceed more smoothly for the patient and for survivors.
Chapter 14. A Few Words on Grief
There are many great books about grief, so we will touch on it only briefly here.
Chapter 15. Some Concluding Thoughts
Making the most of life, dying with the fewest regrets.
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
Chapter 1: What is a Good Death?
As one wag exclaimed: “The best death is one that happens to someone else!”
Another: “I am not afraid of dying, But I am terribly unhappy about not living.”
Different people have different concepts of what makes for a good death, though there do seem to be some rather universal factors that are commonly considered. I first began to learn about how to enable a good death through my work with hospices in the mid-1970s. I first spoke publicly about a good death about 18 years ago, and although my views have evolved a bit since then, fundamentally they have not changed much.
How might we die well? Modern American society — unlike other cultures and times — has no standard, no widely held concept of what constitutes a noble death, a virtuous death, a dignified death and therefore a good death. This has not always been true. Others have had the jousting knight in shining armor, the samurai, the wise and revered elder, or some form of a socially acceptable or noble death. I am writing here about some aspects of goodness at the time of death, rather than “death with dignity” (a political movement to support aid in dying). I’m not sure there really can be a truly dignified death or an entirely good death. After all, who wants to die? Who wants a loved one to die? Nevertheless, it will happen.
We need a new approach to death. When death is viewed as a failure rather than as an important part of life, individuals are diverted from preparing for it, and medicine falls short in helping people die a good death. We need a new approach to death. It is time to break the taboo around death and take back control of a subject that has been medicalized, professionalized, and sanitized to such an extent that it is now alien to most Americans’ daily lives.
One of the first books published in 1474 by William Caxton, England’s first printer, was a manual of how to die. It remained a bestseller for two centuries. It was not until after the Reformation that European death became macabre, and Francis Bacon was the first to suggest that doctors might hold death at bay. Earlier Arab and Jewish doctors had thought it blasphemous for doctors to attempt to interfere with death. For Paracelsus, death was “a return to the womb.”
What we are addicted to now, it seems, is the belief that we can micromanage death. We tend to think of a good death as one that we can control, making decisions about how much intervention, how much pain relief, whether our final moments are in the home or the hospital, who will be by our side. We even sometimes try to make decisions about what we will die from. This can be valuable, as when a cancer patient with little hope of survival rejects debilitating chemotherapy. But often, our best-laid plans go awry. Dying is awfully hard to choreograph. Caitlin Doughty, a mortician who advocates acceptance of death, writes:
For me, the good death includes being prepared to die, with my affairs in order, the good and bad messages delivered that need delivering. The good death means dying while I still have my mind sharp and aware; it also means dying without having to endure large amounts of suffering and pain. The good death means accepting death as inevitable, and not fighting it when the time comes. This is my good death, but as legendary psychotherapist Carl Jung said, “It won’t help to hear what I think about death. Your relationship to mortality is your own.”
R. Alan Woods, in The Journey Is The Destination: A Photo Journal, says “we die well when we die with purpose fulfilled.” And there is an old Sufi saying, “the happiness of the drop is to die in the river.”
THE DEATH I WOULD LIKE
My concept of a good death might also be called “the least worst death.” As an Episcopal priest for over forty years, I have seen all manner of death. Most of those I have witnessed were horrible: full of pain and suffering, lacking love and support, and not at all the way the dying person wanted to die.
As I ponder this concept of a least-worst death, my notions include some of the following: it would be good not to die alone, to have the companionship of my family and others whom I love and who love me. It would be good to be free from physical pain, and to be free from the fear of recurring pain. The anxiety and dread that physical pain may return can be as disabling as the pain itself. And it would be good to receive treatment that reflects and honors my wishes.
I would like to be in friendly, familiar surroundings — preferably at home, with my own belongings, in my own place. That may mean having my favorite pictures on the wall, my pet dog by my side, and the accustomed view out the window. In other words, it would be good to be in control as much as possible: to make decisions regarding my care, and to have those decisions honored. It would be good to be touched, to be held, or to be left alone, as I may need. And I hope to be free to express my emotions — to be angry, to cry, to retain a sense of humor, to laugh, to love.
It would also be good if those around me could express what they feel. Sometimes people tip-toe too much around the dying person. I would prefer straightforward talk, including knowing the truth, even painful truth. Too often the truth is withheld from the dying person.
Of course, I do not want to be financially exploited. I want to know my insurance coverage and have financial affairs in order. During the last six months of life, the average American is encumbered with over half of all lifetime medical expenses. And the funeral industry maintains subtle practices of financial exploitation. I think my plans will prevent this from happening.
I hope to have led a purposeful life and to be able to have that life affirmed before I die. I’d like to reflect with others on that life: successes, flaws and all. This book itself and my campaigning for the right to die well has been a large part of my purpose for the past two decades.
Another aspiration I have is to be free from emotional pain and to be at peace with myself. This may include having taken care of literal and figurative unfinished business — having made funeral plans, body donation plans, setting monetary plans in order, updating my will, being at peace with my God and dying with a kind heart, and so on. And it may include having made an effort to reconcile former interpersonal conflicts, to put relationships straight (including saying goodbye). It would be good to die knowing that my family will receive emotional help with bereavement.
I close these personal reflections with the hope and conviction that we can all do more to enable a better death, the least-worst death. Your loved one’s death may be greatly soothed by the munificence of your putting this knowledge to work on their behalf.
CHANGE IS NEEDED
Specialized care is needed when a person is near death. Physical and mental changes occur that can confuse and frighten those around them and result in inappropriate responses. When one can no longer take food orally, the temptation is to use a feeding tube. When a dying person gasps for air, the tendency is to reach for an oxygen mask. But are these desirable? Not necessarily, experts say. In fact, such interventions can do more harm than good.
Our death-denying culture has led to a system of care for the terminally ill that allows us to indulge the fantasy that dying is somehow optional. In many ways, we act as if we can avoid death indefinitely if only we are quick enough or smart enough or prepared enough. Even hospice workers call their field by a new name that accentuates the positive: they used to say they specialized in “death and dying,’’ but today the umbrella term is “end of life.’’ The shift is subtle but significant — an emphasis on “life’’ rather than “death.’’ What we have, then, is a medical system for the dying that is as ambivalent about dying as we are ourselves.
That is not surprising. Who can say what it is really like to die? You get only one chance to do it, and there is no reporting back from the field. In her book Handbook for Mortals, written with Joan Harrold, Joanne Lynn, who is also a senior scientist at the RAND Corporation, wrote about a seriously ill patient who opens his eyes and sees a nurse. “Am I dead yet?’’ he asks. “No,’’ says the nurse. He thinks for a moment and then asks, “How will I know?’’
When it comes to self-imposed death, to help us out of the maze of terminology and distinctions, the Protestant moralist Robert Paul Ramsay has suggested the alternative term agathanasia, which I rather like. Combining the Greek adjective agathos, meaning good, and the noun thanatos, meaning death, this new term is free of the emotional connotations that euthanasia stirs up and that often preclude intelligent discussion of the issue. And many misinterpret euthanasia as someone acting upon someone else. Ramsay uses this term to refer to a death with dignity. Many moralists, like Curran, Ramsay, and Haring, while they would condemn positive euthanasia and advocate an ethics of agathanasia, would share with others the concern for the values of compassion and human freedom.
INSIGHTS OF OTHERS
The Greek philosopher Epicuris said “The art of living well and dying well are one.” Dame Cicely Mary Saunders was an English Anglican nurse, social worker, physician and writer, involved with many international universities. She is best known for her role in the birth of the modern hospice movement, emphasizing the importance of palliative care in modern medicine. Says she: “How people die remains in the memories of those who live on.”
And remember the words of Ralph Waldo Emerson: “It is one of the most beautiful compensations in life that no man can sincerely try to help another without helping himself.”
In Love in the Time of Cholera, Gabriel García Márquez writes, “Each man is master of his own death and all that we can do when the time comes is to help him die without fear of pain.” And in his book Lies My Teacher Told Me, James W. Loewen reports:
“Many African societies divide humans into three categories: those still alive on the earth, the sasha, and the zamani. The recently departed whose time on earth overlapped with people still here are the sasha, the living dead. They are not wholly dead, for they still live in the memories of the living, who can call them to mind, create their likeness in art, and bring them to life in anecdote. When the last person to know an ancestor dies, that ancestor leaves the sasha for the zamani, the dead. As generalized ancestors, the zamani are not forgotten but revered. Many can be recalled by name. But they are not the living-dead. There is a difference.”
A few other relevant quotations expressing thoughts on the quality of death:
Memories are of the ethereal, and not the material world, that is how I know I am forever.
— Michael Poeltl
I mean, they say you die twice. One time when you stop breathing and a second time, a bit later on, when somebody says your name for the last time.
Carve your name on hearts, not tombstones. A legacy is etched into the minds of others and the stories they share about you.
— Shannon L. Alder
More are men’s ends marked than their lives before. The setting sun, the music at the close, as the last taste of sweets, is sweetest last, writ in remembrance more than things long past.
— William Shakespeare, Richard II
Some research about what constitutes a good death can be found in Appendix K. Poets, professors, priests, and plain folks all opine about what makes a “good death.” In truth, deaths are nearly as unique as the lives that came before them: shaped by the attitudes, physical conditions, medical treatments, and mix of people that accompany them. You, and only you, can determine what your good death may be. How would you like to die.