Contents: UU World Back Issue

Compassionate advocacy

by Barbara Coombs Lee

Rachel Naomi Ramen, who wrote Kitchen Table Wisdom, tells a wonderful story about doing a reading in a bookstore. During the discussion period one woman described the death of her husband. Obviously distressed, she told of his dying in a state of anger, bitterness, and alienation. Ramen asked, “What did you learn from this experience?” The woman answered vehemently, “I learned I don't want to die like that.” “And how do you want to live so you won't die like that?” Ramen asked. The woman later reported to Ramen that from that question she came to understand that an awareness of our mortality is a source of courage in living, that in that understanding she found the courage to say and do things that needed to be said and done in order to be fully present with her self, with her loved ones, with her life.

As president of the Compassion in Dying Federation, I know that coming to terms with death is an individual journey and a collective one. Books and stories from Charlotte's Web to Tuesdays with Morrie attest to the fundamental lessons the dying teach us. If we're willing to be present with death, we may find a small refuge from everything that is not genuine or authentic in our culture. Compassion in Dying volunteers often discover quiet meaning at the bedsides of clients. A dying person often drops roles, takes off masks, and strips back to what really matters. People courageous enough to be conscious with their dying lead us to the same integrity. As Ramen says, “Wholeness evokes wholeness.” Working with the dying gives us at Compassion a better place from which to live. A society that acknowledges the inevitability of death gives everyone a more authentic living environment.

Compassion in Dying is a ten-year-old organization dedicated to improving the care and expanding the options of the terminally ill through advocacy, litigation, lobbying, and patient support. Growing from its roots in the Pacific Northwest, where it is the leading champion of Oregon's groundbreaking Death with Dignity Act, Compassion has opened offices in five other states and has care advocates in another five. The national spotlight has been focused on our organization as it has defended the Death with Dignity Act through many legal challenges, the most recent from Attorney General John Ashcroft. In late May, a federal appeals court panel upheld the law, ruling that Ashcroft had overstepped his authority in attempting to regulate medical practice.

The fundamental work of Compassion in Dying is acknowledging the potential suffering inherent in slow deterioration to death, advocating for better pain care, empowering patients with a legal choice for assisted dying, and reclaiming death from the realm of medical technology and returning it to the circle of human connection. So our role as stewards of Oregon's assisted dying law is natural for us.

Over the years Compassion has worked with hundreds of patients and families throughout the nation who face a maze of medical complexities around end-of-life care and desperately seek a way to regain control of their lives and their deaths. In Oregon, the only state with an assisted dying law, our work is legal and open; in other states it is often covert. But more often than not, working with clients, families, their doctors, and hospice professionals, we are able to find a path to dying with dignity, peace, and control. In other states we come as close to the optimal health care model of choice in dying as we can, without the safeguards and oversight written into the Oregon law. But everywhere we are able to advocate for our clients and empower them with choices.

Death with Dignity Act

The Death with Dignity Act sets out definitions and requires an extensive, careful process. To request a prescription for lethal medications, the patient must be 18 or older, an Oregon resident, able to make and communicate health care decisions, and diagnosed with a terminal illness that will likely lead to death within six months. Before a prescription is granted, two licensed Oregon physicians— attending and consulting— must verify the diagnosis and prognosis, attest to the patient's mental competence, order a psychiatric evaluation if impaired judgment is suspected, advise the patient of all treatment alternatives, document two oral and one signed requests, enforce two waiting periods, confer with the dispensing pharmacist, and submit written documentation to the Oregon Department of Human Services.
The history of Oregon's groundbreaking law is deeply embedded in my congregation, the First Unitarian Church in Portland, Oregon. Here the awareness of injustice took root when Janet Adkins, who worshiped in those pews, became the first person Dr. Jack Kevorkian helped to die. It was the Rev. Dr. Alan G. Deale, our church's minister, now emeritus, who broke with other clerics in 1991 and told an Oregon Senate committee that since a 1988 general resolution, the Unitarian Universalist Association has considered “the right to self-determination in dying, and the release from civil or criminal penalties of those who, under proper safeguards, act to honor the right of terminally ill patients to select the time of their own deaths” to be inherent in one of the association's Seven Principles: respect for the worth and dignity of each individual. And it was in that church's chapel that we held many news conferences during heated statewide campaigns in favor of the law in 1994 and 1997.

The law was approved in a 1994 ballot initiative by a slim majority of 51 percent. Since then, it has held up under continuous siege. It has been challenged in court by national right-to-life groups but upheld when the U.S. Supreme Court declined to hear an appeal. The Oregon Legislature forced a second statewide referendum in 1997—but this time it was approved by a strong 60 percent majority, allowing it to finally take effect that November. The head of the federal Drug Enforcement Administration immediately declared it illegal, but a legal analysis by the Clinton administration Justice Department overturned the ruling. Congress tried twice to trump it with federal law, but failed. Then came the 2001 attack from the Bush administration Justice Department, which has been turned aside by rulings from a federal judge and, in May, the appeals panel.

Since the law took effect through the end of 2003, 265 individuals have completed the elaborate process to obtain a prescription for life-ending medication. Only 171 have administered the medication. Patients making requests are generally dying of cancer, well-educated, and receiving hospice services at home.

Meanwhile, medical science has been paying close attention. Official yearly reports have appeared in the New England Journal of Medicine. Other authoritative medical journals have published rigorous epidemiological studies. And it's been one piece of good news after another.

  • In 2000 NEJM reported results from investigators at the Veterans hospital, Oregon Health and Science University Center for Ethics, and Providence Health System. This study confirmed official state reports and found no unreported cases in a statewide survey. Physicians grant one in six requests and one in ten requests results in hastened death. Some patients with symptoms of depression do make requests, but none have been granted.
  • In 2001 investigators reported in the Journal of the American Medical Association that Oregon physicians had responded to the new law by gaining knowledge in pain treatment, making more referrals to hospice, and improving their ability to recognize depression among the terminally ill.
  • By 2002 routine tracking demonstrated the beneficial impact of choice on the quality of end-of-life care. Oregon's rate of hospice use, percentage of deaths in home settings instead of hospitals, and the quality of pain care all compare favorably with national averages. Oregonians now receive the best end-of-life care in the nation.
  • In 2002 the NEJM published a study reporting hospice nurses' and social workers' observations of assisted-dying patients versus other terminally ill patients. They found the fears of those who requested assistance in dying centered more on losses of independence, mental functions, and control than other patients. They were also less likely than others to be depressed, anxious, or in pain. Family caregivers of requesting patients were more likely to find meaning in caring for their loved one, more prepared for the patient's death, and less burdened by their care than other families.
  • Compassion's own data indicate that the choice of legal assisted dying prevents premature, violent suicides. We've tracked sixty-eight patients who came to us with a plan and the means for violent suicide and never followed through once a peaceful, humane choice became available. Only thirty-two of these individuals ultimately hastened their death under Oregon's law.

Bill Moyers's five-part series on death and dying included an interview with Bill Bartholome, a pediatrician facing an imminent death from throat cancer. Bartholome generously talked on camera about his inner experience as he got closer to death. He talked about what it's like to live “in the light of death.” Not expecting to see another spring and then seeing one, he experienced it as a miracle. He said, “Death transforms living in ways that we in this culture do not understand. I think we need to think of death as sugar, as something that gives life that pizzazz. Makes it sweet.”

Who among us doesn't yearn for the sweetest life, yet simultaneously work to shut out all thoughts of death? Doesn't denial of death in our culture rob us of some of the sweet richness of life? Doesn't it alienate us from one of the core truths that link us as a vast community of living things on the planet?

For too long death has been hidden behind machines and hospital curtains. It's been devalued for its defining role in our lives. Compassion in Dying works to bring death out of the closet and embrace it as part of what gives our life texture and meaning. In the process rich human stories emerge. These stories bring the understanding that the covert, illegal assisted dying that goes on in forty-nine states violates deep individual desires for freedom of choice and profoundly abuses our birthright of integrity and self-determination.

The Rev. Paul Smith's story is about the understanding he gained in ministering to the tennis champion Arthur Ashe as he was dying of AIDS. In his book, Facing Death, Smith makes the simple yet elusive point that death is not the worst thing that can happen to us. When we live as though death is the worst thing that can happen to us we become locked in fear and denial. In turn, denial of death leaves us feeling lost and alone, because death is a defining element of the human experience. Turning away from a core truth of our common shared humanity, we stand to lose something even more precious than life itself: We stand to lose our passion for life and our call to savor it every day to the very core of our being. An awareness of death helps us live in the moment, in community with our fellow mortals. And bringing humane, hastened death into the open empowers individuals, ends the alienation and abandonment of the dying, and helps heal our society of its wounds around fear and denial of death.

Tell your stories. Open your hearts to each others' stories.

Our stories will heal us.

 Contents: UU World Back Issue
: 13-15

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