September/October 2003 Living Now
Compassion in Dying

True stories edited by Barbara Coombs Lee, President of Compassion in Dying

"These rich stories reveal the complexities of end-of-life issues and the human need to affirm deeply held values. By sharing these stories we hope to help others confronting similar situations and help society understand how the issues of a debate play out in the lives of people who might be their neighbors, their friends, their role models."

Since 1993 Compassion in Dying has been advocating for a social revolution that seeks more humane and caring options for individuals who are dying. From its inception, Compassion in Dying has worked to support and counsel patients and families on how to achieve a peaceful and humane death.

Many amazing stories have unfolded from people who have turned to Compassion seeking end-of- life choice with Oregon’s unique "Death with Dignity Act". The Oregon experience with assisted dying teaches that when patients are empowered by choice and control in how they die, they experience renewed hope and courage. Interestingly, most people who obtain the necessary medication to hasten their death do not ultimately use it. But they do experience profound peace-of-mind knowing they have a way to escape intolerable suffering if it were to occur.

The stories in Compassion in Dying tell tales of courage and care in the face humankind’s ultimate challenge, to accept mortality with grace serenity. Thus, the stories are timeless and enduring. But they also possess a unique timeliness because they occur in the context of a contemporaneous ideological battle. They inform America’s dialogue about how much self-determination and decision-making authority government allows individuals at the end of life.

Oregon’s law has been in place since 1994 and during that time Oregon citizens have used the law sparingly. The many safeguards and guidelines established by the state have allowed its implementation without complications. As a result, Oregon has become a national model for the end-of-life care. Our hope is that the stories in Compassion in Dying will bring to the forefront the experiences of individuals who have the choices the law allows - moving beyond the judicial and political wranglings that threaten personal choice and dignity at the end of life.

Death with Dignity, Palliative Care, and Pain Care Advocacy generate vigorous national dialogue. The problems of dying persist: too many people still die in agony, and too many people still endure prolonged dying and needless suffering against their will. The medical/ pharmaceutical behemoth too often treats not patients, but diseases and statistics. Physicians and medical technology partner to deny death its natural course. The result is often a patient stripped of personal autonomy and choice and loved ones left behind to deal with sorrow, guilt, and anger.

Dying has become dominated by technology and medical institutions. Thus it may come as a surprise that individual choice can play a major role at the end of life. It is well established that physicians frequently fail to provide adequate pain care to patients suffering at the end of life. A study published in the Journal of American Medical Association (JAMA) found that over 50% of all dying patients had moderate to severe pain. At the same time it is well established that only perhaps 10% of dying patients have conditions in which alleviation of pain is truly difficult or impossible.

Also, many in the medical community and caregiving community argue that any medication to hasten death, even by a few hours, is unacceptable. But as the stories in Compassion in Dying reflect, the act of dying and the choices made in this final chapter of life move beyond political partisanship, religious beliefs, and societal acceptability into a realm of personal choice influenced by a sense of dignity. Over the course of a terminal illness, many decisions will be made. The stories in this book reveal some of those personal and profound choices made by terminally ill people, often in conjunction with their family members as advocates.
As we were writing this book U.S. Attorney General John Ashcroft was acting on his personal belief that the Oregon law on physician aid-in-dying is morally wrong. He is using his status as the nation’s chief law enforcement officer to threaten doctors who participate in the law with federal prosecution for drug diversion and abuse. Attorneys for Compassion In Dying defended the rights of terminally ill mentally competent Oregonians to hasten their death. The case Oregon v. Ashcroft received major media coverage, advancing Oregon’s unique law into the national dialogue. In April of 2002 an U.S. District judge in Portland ruled against Ashcroft. At great expense to taxpayers, Ashcroft appealed the case to the 9th Circuit Court.

Anticipation rose for months, as court proceedings before the U.S 9th Circuit Court of Appeals progressed. On May 8, 2003 the crowed courtroom buzzed with excitement, but fell silent as the three judges filed in. Attorneys presented oral arguments to the panel. As of this writing we have no word of a decision or when one might emerge. Compassion remains ready to respond with quick action if the court rules against us. If we win, we will join our patients in celebration and prepare to respond to Ashcroft’s next move.

About the Editor - As President of Compassion in Dying, Barbara Coombs Lee built a nonprofit organization that provides legal activism, public education and client services to expand and protect the rights of the terminally ill. She practiced as a nurse and physician assistant for 25 years before beginning a career in law and health policy. Since then she has devoted her professional life to individual choice and empowerment in health care. As a private attorney, as counsel to the Oregon State Senate, as a managed care executive and finally as Chief Petitioner for Oregon’s Death with Dignity Act, she has championed initiatives that enable individuals to consider a full range of choices and be full participants in their health care decisions.

Oregon publisher NewSage Press will publish this book in conjunction with Compassion in Dying’s 10th anniversary. The book foreword is written by Governor Barbara Roberts, author of Death Without Denial, Grief Without Apology (also published by NewSage Press)

ISBN 0-939165-49-X , Bookstores contact Publishers Group West 800-788-3123.
www.compassioindying.org
www.newsagepress.com.