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Compassion in Dying, Issue 4

Compassion in Dying is a nonprofit organization created to support the right of terminally ill patients to choose to die without pain, without suffering, and with personal assistance, if necessary, to intentionally hasten death.

Contents:

  1. One More Step
  2. Director's Report
  3. Our Role in the Death with Dignity Movement
  4. Right to Die Form of Privacy
  5. Defining Terms


One More Step . . .

Compassion's landmark victory in the case, Compassion in Dying et. al. vs. Washington State, was overturned on March 9 by two judges of the Ninth Circuit Court of Appeals. In May 1994 Judge Barbara Rothstein had previously upheld the right of a mentally competent, terminally ill patient to receive medicine with which to hasten death.

So far, two federal judges have validated Compassion's position allowing terminally ill patients to request assistance with dying, and two have ruled against it. Coincidentally, this mirrors the equal division in surveys of the medical profession on doctors writing prescriptions for this purpose.

The author of the Ninth Circuit March 9 decision was Judge John T. Noonan, Jr., a former leader in the U.S. antiabortion movement. Judge Noonan has a doctor's degree in scholastic theology from the Catholic University of America and was a consultant to the U.S. Catholic Conference and a former director of the National Right to Life Committee. He was joined in the two-to-one decision by Judge Diarmuid F. O'Scannlain.

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The third Appeals Court Judge, Eugene A. Wright, said in his dissenting opinion, "The majority's approach subjects such (terminally ill) patients to unwanted and needless suffering. . . . The right to die with dignity falls squarely within the privacy right recognized by the Supreme Court. The right to die with dignity accords with the American values of self-determination and privacy regarding personal decisions."

Compassion's other case, Quill et. al. vs. Vacco et. al., is before the Second Circuit Court of Appeals, with a hearing expected this spring.

Supporting our two cases through Amici briefs are civil liberties' organizations, the Unitarian Universalist Association, and groups serving the elderly and persons with AIDS. The opposition is led by the hierarchy of the Roman Catholic Church and several organizations known for antiabortion activities.

Thirty states plus the District of Columbia have statutes specifically outlawing assisting with suicide, which can punish doctors who prescribe drugs for the purpose of hastening death. In other states, such acts can be prosecuted under the homicide or manslaughter laws. Oregon is the only state where a law prohibiting assistance with suicide has been erased by popular vote. The Supreme Court should be the final arbiter of constitutional issues around the right to die, and we hope the Court selects the Compassion or Quill case for review.

The attorney for Compassion is Ms. Kathryn Tucker of Perkins Coie in Seattle, aided by lawyers from the firm of Hughes Hubbard & Reed in New York, two of the most solid and prestigious law firms in the country. The constitutional issues touch upon the fundamental concept of personal liberty grounded in the 14th Amendment and expanded upon by several Supreme Court decisions on abortion and the withdrawal of life supports. The basic constitutional freedoms at stake here are so important, so essential to exercising significant life choices, that the best legal minds in the country should debate the issue.

Compassion's cases do not seek protection for euthanasia through lethal injection, mercy killing, or any action by one person to cause the death of another. They seek only to defend the right of a mentally competent, terminally ill adult patient in end-stage disease to request and receive prescription drugs to be self-administered for the purpose of hastening death to avoid extreme suffering.

Regardless of the Noonan decision, Compassion is continuing to assist patients and families when we are asked to be present at the bedside of patients who are hastening their deaths.

Until the Supreme Court finally resolves the rights of dying patients, we encourage physicians to quietly use their prescription pads to meet their patients' needs and requests. To physicians who call, we can provide information about drugs which have proven effective in bringing about a safe and tranquil final sleep.

We urge our readers to support these pioneering cases through financial contributions.


Director's Report

The chief minister of Australia's northern province recently announced legislation which would permit a mentally competent and terminally ill patient to use medication to hasten death in order to avoid prolonged suffering.

Minister Marshall Perron said his mother died an agonizing death a year ago. His bill would give dying patients the right to end their lives in a humane manner. An Australian opinion poll finds 79% support. Northern Territory Catholic Bishop Ted Collins described the proposed law as abominable. "We will fight it tooth and nail because life is sacred," Collins said on the Australian national radio.

This exchange points up several key ingredients in the debate around death with dignity:

  • People become aware of the need for change in terminal care after one of their own parents or family members suffers an agonizing death.
  • Reform efforts are designed to give people more control over their own fate.
  • These efforts trigger an automatic reaction from religious functionaries whose opposition is basically theological.
  • The movement to allow a more humane form of dying is worldwide and occurs even in nations with comprehensive health insurance and where the cost of care is not an issue.

In America, many physicians decry the poor skills of their colleagues in controlling pain, stating that with better pain management terminal patients will endure the process of dying without asking for help in ending their lives. It is claimed that if all terminal patients had hospice care, the movement for decriminalizing hastened death would go away.

The years roll by, and still many doctors refuse to prescribe sufficient morphine and other pain drugs, or nurses refuse to administer injections fearing they might contribute to the patient's death. But even when morphine and other pain medications are abundantly administered, some small percentage of cancer patients still suffer horribly.

Other opponents of change argue that patients seek to hasten death because of the high cost of medical care. They say we must postpone legal reform for death with dignity until we reform the health insurance industry. And some argue that dying patients who speak of hastening death are mentally ill and should be treated for depression.

All these arguments ignore the fact that end-stage terminally ill patients choose to end suffering largely because they are simply worn out by the process of deterioration and further deterioration will leave them unable to make their own decisions.

According to reports from Holland and our own experience in Seattle, pain is rarely the reason for wanting to die. Families encourage dying patients to hang on regardless of the cost. Some doctors mistake exhaustion for depression, suggesting psychotherapy when the body's basic organ systems are already shutting down.

And finally, those who come to welcome death as a final release do so not because they lack a respect for life, but because they insist upon the inherent worth and dignity of their own lives. In the words of Jo Roman, cancer patient and author of Last Exit, such persons desire "to leave life, not to destroy it."

Peter Singer is another Australian with insights on this subject. His new book, Rethinking Life and Death; The Collapse of our Traditional Ethics, should be required reading for physicians, legislators, and judges. The new medical ethics being forged today will revolutionize our attitudes toward everything from fertilized zygotes to comatose bodies. Out of it should come a heightened respect for persons and personhood, and just in time.


Our Role in the Death with Dignity Movement

Six organizations in the United States are working on the "right to die." Americans for Death with Dignity sponsored the California initiative campaign in 1992. The Death with Dignity Education Center in San Mateo fosters communications between right-to-die groups. In Oregon, the Hemlock Society USA promotes the National Death With Dignity Week and publishes educational materials. Oregon Right To Die was the sponsor of Measure 16 which overturned the assisted suicide law and is now defending the initiative in federal court. In New York, Choice in Dying is the major distributor of advance directives (Living Wills).

Compassion in Dying was organized in Seattle in April 1993 as a nonprofit charitable 501 (c) (3) organization to assist terminally ill patients considering hastening the process of dying as the only way to end their suffering. Usually these are patients dying at home from end-stage cancer, AIDS, emphysema, or other incurable diseases.

Compassion is governed by an elected Board of Directors with an Advisory Committee of distinguished professionals. Many have been in the leadership of right-to-die activities for six years. It is a "strong board" organization with volunteers actively engaged in day-to-day operations.

Compassion serves terminally ill patients in two ways:

First, for two years the organization has offered information, counseling, and emotional support for dying patients who decide to hasten death, and to their families. For patients who meet our Guidelines and Safeguards, we provide information about how a safe and humane death can be accomplished. We have physicians and other trained persons willing to be present at the time of death for the support of the patient and family.

Second, Compassion's National Litigation Project is challenging the constitutionality of state laws that prohibit dying patients from receiving prescription medications which they may self-administer to hasten death. We have answered questions from over 300 persons about how a humane death could be accomplished and have described options in terminal illness to approximately 11,000 who have written for information. Of the more than 60 patients with whom we have had close counseling relationships, 48% had terminal cancer, 35% had AIDS, and 17% had pulmonary or neurological diseases. Male patients have slightly outnumbered females. All the patients we have worked with have had comprehensive health insurance, and almost all felt satisfied with the care received from their physicians, except for cases where doctors refused the patients' requests for final prescriptions.

With forthright and compassionate counseling, relationship problems within the family can often be resolved prior to the patient's death. We have witnessed extraordinary examples of forgiveness, acceptance, and reconciliation.

Some patients only need our counseling and advice and are able to die with just family or friends present. Compassion has been present on over 15 occasions as the patient succumbed. We do not administer lethal injections or provide a means of ending life, such as carbon monoxide, but working with patients to obtain prescriptions for barbiturates and other medications from their own physicians.

The reason that Compassion's involvement with dying patients has not been more widely seen on television is that we do not report these deaths to the press or law enforcement bodies.


Right to Die Form of Privacy

Reprinted from the Seattle Post-Intelligencer, 3/15/95

A three-justice panel of the 9th Circuit Court of Appeals has given short shrift to U.S. District Court Judge Barbara Rothstein's ruling last year that Washington's 1975 law banning physicians from assisting in the deaths of the terminally ill and mentally competent is unconstitutional.

The appellate judges missed the mark because they miss the point.

In overturning Rothstein's opinion, and upholding the constitutionality of the state's law, Justice John T. Noonan (who was joined in the decision by Justice Diarmuid O'Scannlain) wrote that "Compassion cannot be the compass of a federal judge."

While it certainly is more compassionate to grant a dying person surcease from pain and suffering than to insist that the person's agony and indignity be prolonged to enforce some societal edict, it is not Compassion that drives Rothstein's ruling. It is logic.

Rothstein recognized the implicit and unavoidable analogy between the constitutional grounding of a woman's right to choose to have an abortion and a dying person's right to choose the time and nature of her or his death.

In the landmark Roe vs. Wade decision, the U.S. Supreme Court recognized not so much a right to abortion as a right to privacy, a right to make reproductive (and by definition private) choices free of the interference of government. In the subsequent Planned Parenthood vs. Casey decision, which reaffirmed Roe vs. Wade in 1992, the Supreme Court declared, "Matters involving the most intimate and personal choices a person may make in a lifetime . . . are central to the liberty protected by the 14th Amendment. At the heart of liberty is the right to define one's own concept of existence, of meaning, of the universe, and of the mystery of human life."

Rothstein echoed that reasoning in her decision last May, writing, "There is no more profoundly personal decision, nor one which is closer to the heart of personal liberty than the choice which a terminally ill person makes to end his or her suffering and hasten an inevitable death."

In short, if there exists (and the law of the land says it does) a right to privacy that requires the government to stay out of the choice of whether to terminate the life of one's unborn child, the same right requires the government to stay out of the choice of whether to end one's own life.

That right to privacy is not an unrestricted one. Just as there is constitutional room for some degree of regulation of abortion, there is room for regulation of assisted suicide.

The 9th Circuit justices, however, blithely declared that Rothstein's ruling ignored the differences between "the regulation of reproduction and the prevention of the promotion of killing a patient at his or her request"; "...a federal court should not invent a constitutional right unknown in the past and antithetical to the defense of human life that has been a chief responsibility of our constitutional government," O'Scannlain and Noonan wrote.

Bunk. If we are to believe O'Scannlain and Noonan, we must believe that in Roe vs. Wade the Supreme Court wrongly "invented" the right to privacy to which Rothstein refers.

The Roe vs. Wade notion of a right to privacy has its critics. But it is nonetheless the law of the land and can be taken as a guard against government interference in the decision to create another being's life. "This court," wrote Rothstein, "concludes that the suffering of a terminally ill person cannot be deemed any less intimate or personal, or any less deserving of protection from unwarranted governmental interference than that of a pregnant woman."

Rothstein's landmark ruling will be appealed to the Supreme Court where, if reason prevails, it will be upheld.


Defining Terms

Following are two of the definitions used by Compassion in our work:
  1. "Terminal illness": a medical condition that results in death regardless of continued medical treatment. The prognosis of terminal illness is widely used by hospice and other palliative care providers who specialize in the care of dying patients for whom restorative treatment can no longer be expected to be effective.

    Under federal and state law, seriously ill patients are eligible for hospice care when the prognosis is less than six months of life. The concept of terminal illness has become universally accepted in the U.S. health care system as the stage when treatments which attempt to cure are replaced by care which comforts and sustains, when a cure is no longer a realistic goal.

  2. "End-stage" or "end-stage of terminal illness": the final period in the duration of terminal illness before actual death, usually measured in weeks. This period is often characterized by multiple organ failure, the collapse of the immune system, and the inability to withstand infections. It is frequently marked by chronic physical sensations of pain and emotional suffering.

    The respiratory, digestive, and urinary systems may begin to shut down, leaving patients with acute air-hunger, failure to metabolize nutrients, and abdominal distress. The skeletal system becomes brittle and bones sometimes break when the bed-bound patient is turned to prevent bedsores. The skin becomes paper-thin and subject to eruptions, oozing, and infection.

    Until recently, patients in end-stage were universally hospitalized. Now they are increasingly permitted to die at home.


The major difference

It is critical to distinguish between typical acts of suicide and the desire to hasten death by patients in the end-stage of terminal illness.

In typical acts of suicide, the person is mentally depressed or despondent, the act is planned in secret, the act is carried out in a violent manner, and the survivors are left with feelings of shock, confusion, and guilt. In instances of hastened death with medical assistance, the person is not depressed, but is exhausted with the process of dying that is already under way. Hastening death can be carefully considered with family members, physicians, and other care providers. Using prescribed barbiturates and other medications, death is not violent but is a process of falling asleep and dying while at rest. The survivors experience gratitude that the ordeal of terminal illness is finally over for the patient.

Once judges and legislators understand these differences, the trend toward legal reform will quickly move ahead.




  
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This article was provided by Compassion in Dying.
 

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