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CONTENTS

8.06) How to contact Dying Well Network

REFERENCES

ACKNOWLEDGEMENTS

Optimum philosophia et sapientia est comtemplatio de mortis.

I thank each of you who has shared your deathing with me. You are gone from "out there" but you are alive "in here." You have taught me a lot.

I thank the members of the Dying Well Network. You decrease suffering and increase enlightenment. You are a blessing to me and to many.

I thank hospice professionals and volunteers in Rocky Mountain area along both sides of the U.S. and Canadian border. As I helped you, you helped me.

I thank Jeff Winikoff. We have climbed together and boldly gone where few have gone before. You're a rock!

Sandi, my soul-mate of 28 years, I thank you for affording me the time away from you and many of my spousal responsibilities while doing my "social justice" work. You help me understand that I work the issue passionately and, yes, often obsessively, but "Evil flourishes where good people fail to do their duty!" I love you. May we have 28 more years together!

Earth and Sky, you and I live and die forever.

Earth and Sky, you and I live and die together.

And even the stars die…but they twinkle first!

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INTRODUCTION

Many of the most beautiful and meaningful facets of life are the way they are because they are ephemeral. When I was a student in college, often before I went to bed I would listen to Beethoven's Ninth. There was a chord in the final movement that for me lifted the entire piece to an ecstatic plane. Every time I listened, I anticipated that one chord. It lasted approximately seven seconds, and I always wished the feelings I was experiencing would never end. However, one evening I asked myself what it would be like to experience that chord forever. It was then I realized if the chord were made eternal I would develop a hatred for it. I wouldn't be able to bear listening to that chord for a day, an hour, minute or even one more measure. The chord was beautiful and meaningful because of its brief but essential relation to the entire piece. It was beautiful and meaningful because of its finitude.

So many of us live our lives striving for the infinite, for our own immortality. We refuse to acknowledge our own passing placement in the web of life, and in doing so we fail to see our own beauty. It has become our mission to forestall death. Everyday we exercise, eat right, take our vitamins in an attempt to suspend the inevitable. However, the fact remains that in the final analysis there is always death. Even people who have accepted this fact often forget their death can be controlled. We can rightfully be concerned with how and when we die. Today we have a responsibility to reconstruct our understandings of death which have been vitiated by denial and fear. To live full, meaningful lives we must embrace our mortality. We must learn to control our dying that we can die well.

Chad Clouse

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PREFACE

So you're terminally ill, know someone who is…or have the wisdom to know you are mortal now and will be acutely mortal all to soon. We all will die. We may be able to postpone death but we can't avoid it. We all die of something, somewhere, somehow. So we ought not be overly concerned that we die because, ultimately we can't do anything about it.

Although we can't avoid death, we can control it. We can determine how, when, where, and with whom we die.

That is what this book is all about: Controlling dying and thereby dying well.

You really ought to read this book before you need it.

Rob Neils, Ph.D.

Clinical Psychologist

President, Dying Well Network

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1.01) Isn't physician aid-in-dying "playing God"?

This is the same argument that was used against surgery only a hundred years ago. Is open heart surgery "playing God"? Is using artificial birth control or getting a blood transfusion "playing God?" For some religions it is.

Are you "playing God" when you pull the plug...or when you put it in?

Nancy Cruzan was a 32 year-old Missouri woman who was in a persistent vegetative state for seven years after an auto accident. Her folks fought all the way up to the Supreme Court to get her off artificial nutrition and hydration. Finally it was allowed. When the day came to take the tubes out, nineteen people stormed the facility to try to put the tubes back in. They were arrested and placed in jail. Now that's "playing God!"

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2.01) Why should it be doctors who help people hasten death?

They are the only ones trained and legally able to prescribe medications. They have experience in end-of-life treatment. They have a strong interest in preserving life when there is a probability that some quality of life remains. They are regulated by law and professional ethics. They have a system of peer review. Many of them are already doing it, but in secret, without regulation.

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3.01) I won't need it, will I?

About two million Americans die every year; nearly 85% of them in an institution. Of those deaths, some 80% involve a decision by someone to try to prolong life or to let it go. It is estimated that around four of every five Americans will die of lingering, chronic illness which cannot be cured but can be artificially prolonged. Odds are not in your favor to die naturally at home.

Death is inevitable and so is change. You probably do not believe a lot of the stuff you believed as a kid. Beliefs change. Mortality does not. Someday you may be dying and either thankful that your belief system allows you to hasten death or wishing that you had worked out your belief system so you could. Those whose beliefs are inalterably against hastening death need not afford themselves the option.

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4.01) Would this put us on a "slippery slope"?

To live in a civilized culture we must constantly draw lines. We decide where to place these lines by weighing where the possibility of good outweighs the possibility of harm. Opponents argue that once physicians are allowed to hasten death, then catastrophic abuse will follow. It is foolhardy to assert that there are not risks involved with the Death with Dignity movement. That's why there are specific penalties for violation of the terms of such legislation. Bringing end-of-treatment and end-of-life decisions under the law will provide more, not less, protection for dying persons, physicians, and society.

Life itself is precariously poised on a "slippery slope." We cannot avoid life's "slippery slopes." They are unavoidable. So we provide laws as guidelines and safeguards to draw lines and to anchor us. Hikers and climbers sometimes cross steep, icy and snowy, slippery slopes. They rope together and draw a line of travel along the best but least risky route. They set anchors into the snow and ice to insure safety. When aid-in-dying is legalized, lines will be drawn between individual rights and public safety and public laws will set legal anchors to insure against slides down the "slippery slope."

Death with Dignity legislation will take aid-in-dying out of the secrecy where now it is clandestinely done and will place it into the public forum where safeguards can be standardized and regulated. Legalized aid-in-dying will provide greater, not lesser, individual freedom and public safety.

Judge Reinhardt, of the Ninth Circuit Court of Appeals, addressed the "slippery slope" argument.

Once we recognize a liberty interest in hastening one's death, the argument goes, that interest will sweep away all restrictions in its wake. It will only be a matter of time, the argument continues, before courts will sanction putting people to death, not because they are desperately ill and want to die, but because they are deemed to pose an unjustifiable burden on society. The dissent cites the experience in the Netherlands, where physician-aid-in-dying is allowed in some circumstances, to buttress both its claims that physician-assisted suicide cannot be adequately regulated and that approval of that limited practice will inevitably lead to the administration of death-inducing drugs without the patient's consent. We note that the reports on relevant medical practices in the Netherlands are so mixed that it is difficult to draw any conclusions from them. [This is] known as the "slippery slope" argument or what one commentator has called the "thin edge of the wedge" argument. The opponents of assisted-suicide conjure up a parade of horribles and insist that the only way to halt the downward spiral is to stop it before it starts.

This same nihilistic argument can be offered against any constitutionally-protected right or interest. Both before and after women were found to have a right to have an abortion, critics contended that legalizing that medical procedure would lead to its widespread use as a substitute for other forms of birth control or as a means of racial genocide. Inflammatory contentions regarding ways in which the recognition of the right would lead to the ruination of the country did not, however, deter the Supreme Court from first recognizing and then two decades later reaffirming a constitutionally-protected liberty interest in terminating an unwanted pregnancy. In fact, the Court has never refused to recognize a substantive due process liberty right or interest merely because there were difficulties in determining when and how to limit its exercise or because others might someday attempt to use it improperly.

Recognition of any right creates the possibility of abuse. The slippery slope fears of Roe's opponents have, of course, not materialized. The legalization of abortion has not undermined our commitment to life generally; nor, as some predicted, has it led to widespread infanticide. Similarly, there is no reason to believe that legalizing assisted suicide will lead to the horrific consequences its opponents suggest.

The slippery slope argument also comes in a second and closely related form. This version of the argument states that a due process interest in hastening one's death, even if the exercise of that interest is initially limited to the terminally ill, will prove infinitely expansive because it will be impossible to define the term "terminally ill." The argument rests on two false premises. First it presupposes a need for greater precision than is required in constitutional law. Second, it assumes that the terms "terminal illness" or "terminal condition" cannot be defined, even though those terms have in fact been defined repeatedly. They have, for example, been defined in a model statute, "The Uniform Rights of the Terminally Ill Act."

Our conclusion that there is a liberty interest in determining the time and manner of one's death does not mean that there is a concomitant right to exercise that interest in all circumstances or to do so free from state regulation. To the contrary, we explicitly recognize that some prohibitory and regulatory state action is fully consistent with constitutional principles.

Actually, physician aid-in-dying already happens. It happens in secret, without official safeguards or regulation. When physician aid-in-dying becomes legal and regulated, the public will be safer, not less safe!

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5.01) Is hastening death illegal?

In Washington State, a law (RCW 9A.36.060) made it a class C felony to "assist a suicide." The law simply stated, "A person is guilty of promoting a suicide when he knowingly causes or aids another to attempt suicide." A class C felony is punishable by five years in jail, a $10,000 fine, and, if the person assisting is a professional, the professional could lose his or her license or certification.

Early in 1994, four physicians and Compassion in Dying, a nonprofit organization, dedicated to counseling and assisting terminally ill persons to choose the timing and method of their death, filed a lawsuit in US District Court challenging Washington's "assisted suicide" law as unconstitutional. On May 3, 1994, Federal District Judge, Barbara Rothstein, issued a ruling finding Washington's "assisted suicide" law unconstitutional. The Attorney General of Washington appealed to the US Ninth Circuit Court of Appeals to have Judge Rothstein's decision overturned.

On March 9, 1995, a three-member panel of the Court of Appeals voted 2 to 1 to reverse Judge Rothstein's decision, thus upholding Washington's law against promoting a suicide. One of the judges, a Roman Catholic, was a former director of a national right to life organization! Compassion in Dying, et. al., appealed to the Ninth Circuit Court of Appeals to re-study the issue with a panel of eleven justices instead of three. On March 6, 1996, an eleven-member panel concluded, eight to three, that the US Constitution protects the "right to life" and struck down Washington's ban on assisting a suicide. Judge Reinhardt wrote the majority conclusion.

A competent, terminally ill adult, having lived nearly the full measure of his life, has a strong liberty interest in choosing a dignified and humane death rather than being reduced at the end of his existence to a child-like state of helplessness, diapered, sedated, incompetent.

On April 2, 1996, Judge Roger J. Miner, writing a unanimous decision for the Second Circuit Court of Appeals striking down New York's law banning doctors from giving aid-in-dying, concluded that New York's law prohibiting assisting a suicide violated the Constitution's Equal Protection guarantee. New York law allowed physicians to disconnect terminally ill persons from life-support, a medical procedure which helped them die, but it didn't allow physicians to write a prescription for a conscious person to help them die. Through the use of a Living Will terminally ill persons could ask a physician for a medical procedure to end their lives when they became incapable of voicing their wishes verbally, but conscious terminally ill persons couldn't ask a physician directly for a medical procedure to end their lives. Judge Miner argued that the New York law therefore discriminated against conscious terminally ill persons.

Then, even though both the liberal Ninth and the conservative Second Circuit Courts had reached very similar conclusions, Washington's Attorney General asked the remainder of the twenty-four judges of the Ninth Court of Appeals to re-hear the suit for the third time. The Ninth Circuit Court refused. Within hours of that refusal US Supreme Court Judge, Sandra Day O'Connor, issued a stay order blocking physician aid-in-dying from becoming legal within the Ninth and Second jurisdictions. Judge Sandra Day O'Connor, exercising responsible caution, thereby gave both Washington and New York's Attorney-Generals the chance to appeal the decision to the US Supreme Court. The cases were appealed. On October 1, 1996, the Court took up the issue. The court will hear oral arguments in January and it is estimated that the Court will have a decision by July, 1997.

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6.01) The case of Nancy Cruzan.

Nancy Cruzan was a 32 year old Missouri woman comatose for seven years after a car accident in 1983. Two state courts agreed that Nancy lay in a persistent vegetative state without cognitive brain function. In July, 1988, a circuit court judge ruled that Nancy's parents, acting on her behalf, could order her feeding tube removed.

The attorney general of Missouri appealed the decision to the Missouri Supreme Court which reversed the trial judge, expressing belief that the state's interest in preserving Nancy's life outweighed her right to refuse treatment. The court ruled, "The state's interest in life is unqualified." The quality of life was, to that court, not germane.

The state of Missouri paid for Nancy's care. There are some 10,000 people now being kept alive in the US in a persistent vegetative state.

Joyce and Lester Cruzan, Nancy's parents, then took Nancy's case to the US Supreme Court. Supporting the Cruzan's petition to disconnect Nancy's feeding tube were the American Medical Association, the American Academy of Neurology, The American Nurses Association and the Society for the Right to Die. The American Academy of Neurology argued that "duty" requires doctors to continue treating unconscious patients as long as there is some chance of improvement. . .which Nancy didn't have. They concluded that when hope is gone, "duty ends."

On June 25, 1990, the United States Supreme Court, in a 5 to 4 vote, ruled that there was no "clear and convincing evidence" that proved Nancy would have wanted the tube feeding stopped despite the testimony and pleas of her parents, Lester and Joyce. Nancy, in her thirties, was predicted to "live" for another 30 years.

On December 14, 1990, the Curzans produced that "clear and convincing" evidence to Judge Charles Teel, Jr. The judge then ruled that Nancy Cruzan, in a permanent vegetative state since January 11, 1983, could be withdrawn from having chemical nutrition and hydration pumped into her stomach. She was expected to die within a week or so. The state of Missouri, which had opposed the removal of Cruzan's feeding tube, withdrew from the case after the Cruzans produced "clear evidence" that Nancy would have wanted to be taken off the tube feedings.

Nancy died Wednesday, December 26, 1990, twelve days after the tubes were removed. Lester and Joyce Cruzan, who had long held that their daughter was already "gone," issued a statement calling her "our bright flaming star who flew through the heavens of our lives."

After Nancy Cruzan had been taken off tube feeding, some religious bigots stormed the facility where Nancy lay dying. They were going to try to put her back on! They were stopped. Nineteen of them were placed in jail. A bigot is a person of strong conviction or prejudice, especially in matters of philosophy, politics, race or religion, who is intolerant of those who have differing opinions, no matter how reasonable or popular. Bigots cannot appreciate the valid opinions and beliefs of others. They will not follow democratic principles or even the laws of the land when they disagree with them. They follow their own absolute agenda which they dictate to all people across all situations across all time. They suffer from what Dr. Jack Kevorkian calls "a case of eternal ethics."

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7.01) The Courage to Advocate for the Right to Die.

Frances Graves, 76, a Death With Dignity pioneer, wrote:

There is concern throughout the world over denial of human rights. The violations include imprisonment without trial, torture, killings, and discrimination against women, racial, religious and political groups.

A less recognized but also important violation is increasingly occurring in our freedom-loving country. We deny incurable patients the right to die with dignity and to hasten a lingering, painful dying. Individuals who have lived free lives, making their own personal decisions since childhood, are being denied this last choice.

This denial is not yet well recognized as being a violation of human rights. This may be because the motive is good. The general idea of preserving life is good, but carrying it to an extreme is not. Following one's religion is good, but imposing it on another is not. Another reason this violation is often not recognized is the gradual nature of the increasing power of medical technology to maintain a semblance of life longer and longer. We are so pleased with great medical advances that we overlook their misuse and their painful side effects.

If we value freedom, we will not allow medical "ethics," certain religious beliefs, or outdated, misapplied laws to become paternalistic dictators at the end of our lives.

We must work for legal recognition of the right to die, just as some of us have worked for other rights. Our ancestors sometimes risked or lost their lives fighting for freedom we now enjoy. They were misunderstood and maligned, as we will be, but that is the price of freedom.

Let's work hard to grant the last wish of the terminally ill: To die with dignity!

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8.01) Purpose

Dying Well Network is a nonprofit organization created to supply information to terminally ill persons and their families. If requested, Dying Well Network may also be present at the time of death. Dying Well Network actively supports the right of an adult, competent, terminally ill person to choose the time and method of his or her death, within the bounds of the law.

Acceptance of death often leads to an increased quality of the life the terminally ill person has remaining. A terminally ill person lives better knowing that he or she may gain control over the physical pain, the psychological agony and the financial devastation of dying. Terminally ill persons who have had control over their living expect to have control over their dying.

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