Compassion in Dying: Barbara Coombs Lee '69

Barbara Coombs Lee ’69 has found herself sparring with U.S. Attorney General John Ashcroft over whether terminally ill patients have the right to decide when they will die, and whether doctors may prescribe medication to help them do so.

Lee (pictured below) is president of the Compassion in Dying Federation, a legal advocacy and education organization that focuses on expanding end-of-life choices. She is a chief petitioner and co-author of the Oregon Death with Dignity Act, the only existing aid-in-dying law in the United States. Compassion in Dying focuses on what Lee calls “bold and aggressive” advocacy, as well as patient care and public education programs. “I admit that it’s a hard sell,” she said. “If this issue were just about a few people who take medicine to hasten their deaths, it wouldn’t have a lasting interest to me.”

The issue, as Lee sees it, is about “freeing patients to make choices consistent with their own values and beliefs.” Medical care is the context of Compassion in Dying’s work. Lee integrates Compassion’s advocacy into accepted standards of care and said that “assisted dying should be openly available as part of excellent end-of-life care.” Two physicians must certify the patient’s terminal diagnosis, competency, and independence. Only the patient can administer the prescribed dose.

An English major at Vassar, Lee recalled the influence of “Thoreau and Melville in the hands of Vassar professors.” It was then that she learned, “It’s a good thing to poke around at the margins of life. You can scrape away at the borders between worlds.” Encouraged by her success in an organic chemistry class at Vassar (her science requirement), Lee went on to study nursing at Cornell University, a leap that she says seemed natural as she sought opportunities to “know life” and connect with people. She obtained advanced training in medicine at the University of Washington and became a physician assistant and nurse practitioner. Relationships with patients, Lee said, were always the most satisfying parts of the job.

After receiving her law degree from Lewis and Clark College, Lee was administrator and counsel for an Oregon State Senate committee, where she worked alongside Oregon State Senator Frank Roberts, who had terminal prostate cancer. Lee saw his proposed aid-in-dying bill defeated in the state senate and a similar ballot measure narrowly defeated in Washington State.

Oregon’s state constitution allows for direct citizen lawmaking through a democratic initiative process. Lee became involved with the issue first as a volunteer, during collection of the 90,000 signatures needed to put the Oregon Death with Dignity Act on the ballot in 1994. The law passed.

In 1996, Lee joined Compassion in Dying as interim executive director and became its executive director in 1997. That year, the Ninth U.S. Circuit Court of Appeals overturned a temporary restraining order won by what was then the law’s primary opposition — the National Right to Life Committee — in the U.S. District Court. When the U.S. Supreme Court declined to hear the case the law went into effect.

But National Right to Life was well funded, well organized, and succeeded in placing a repeal of the Death with Dignity Act on the ballot in November 1997. This time, Oregon voters said “no” to repealing the Death with Dignity Act by a 60/40 split. “It was a victory of grassroots over entrenched political power,” Lee said.

The issue still sparks passionate debate. Much of the moral controversy surrounding assisted dying concerns its potential misuse or abuse, with opponents fearing that individuals might end their lives too quickly or that the decision might not be completely voluntary. Political debate centers on whether assisted dying falls under state or federal jurisdiction. It is in this area that Lee has encountered fierce opposition from the federal government, via Attorney General John Ashcroft. In November 2001, the Justice Department issued its determination that the Controlled Substances Act prohibits Oregon doctors from prescribing lethal doses of medication to terminally ill patients, and thus bars doctors from using the Oregon law.

Compassion earned a major victory for its patients when U.S. District Judge Robert E. Jones issued a permanent injunction against the Justice Department’s ruling. The Justice Department is currently appealing the case on the grounds that “suicide is not a legitimate medical purpose,” and thus, doctors should not be permitted to prescribe medicine to help patients end their lives.

During the law’s first four years, 91 Oregon residents used the assisted-dying law to end their lives. Compassion in Dying worked with 67 of those residents, and with an additional 30 who used the law in 2002. (Statewide figures for 2002 were not available at the time of this printing.)

“Oregonians debated a complex medical and moral issue and chose an approach that works well,” said Lee, who is confident about the law’s legal fortitude, but remains focused and vigilant, especially on patient care and public education. “Helping people be comfortable with mortality is a big part of the whole thing,” Lee said. She travels nationally and internationally and speaks to audiences that often include hospice patients; people with cancer, heart disease, and emphysema, among other diseases; and people who have experienced the death of a loved one and “came away with a sense of unease [about the dying process].”

At many lectures and workshops, Lee presents alongside an actor, who portrays the experience of dying and the process of thinking about death. Compassion in Dying recently introduced a series using this method, called “The Craft of Empathy,” to second-year medical students at Columbia College of Physicians and Surgeons.

“Passing a law, as hard as it is, is just the first step,” Lee reflected. “You can pass a law on paper, but a law is hollow unless the advocacy continues and is right on the ground.” On the legal end, Lee — with Compassion in Dying — is in the midst of the appeals process with the Department of Justice. For information and updates, visit www.compassionindying.org. For an opposing view on the issue, visit Physicians for Compassionate Care Educational Foundation at www.pccef.org.