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Heart and Soul of the Movement

By Gwen Fitzgerald

Serendipitous events and significant encounters led Compassion & Choices President Barbara Coombs Lee to help transform end-of-life policy and practices in America. At her 20th anniversary with the organization, Barbara leads an exploding movement to change how Americans approach death. She sees the past with nostalgia and gratitude, and the future with optimism.

Barbara Coombs Lee witnessed many deaths — peaceful, protracted and tortured — during her 25-year career as a nurse and physician assistant. But one significant encounter with a dying patient implanted the central tenet of her future life’s work. A young man dying of leukemia was nearing death and remained estranged from his parents. Barbara twice encouraged him to reconcile before he died. “Everyone has their own agenda for me,” he admonished her. “But this is my death, and I’ll do it my own way.” That interchange solidified for her whose values and priorities must always be preeminent at life’s end: the dying individual’s.

Eventually the demands and repetition of clinical medicine set in, and Barbara earned a law degree. Her first job in the legal field was staff member to a committee of the Oregon Legislature. In 1991 Sen. Frank Roberts introduced a medical aid-in-dying bill to authorize qualified terminally ill adults to obtain medication to die peacefully. The legislation seemed uniquely poised to advance: a highly respected sponsor who himself was terminally ill and married to the sitting governor. Nevertheless, lawmakers did not give the bill even a serious hearing. The cursory legislative process made clear whose values and priorities lawmakers respected. “The political environment and healthcare policy were not oriented to individual needs; they were oriented to HMOs, healthcare institutions, provider organizations and big insurance companies,” Barbara says. “Then, as now, the needs of people are given short shrift.”

But serendipity alighted. Among the naysayers, one voice resonated — and, again, changed the course of Barbara’s career. A minister testified that his entire denomination supported aid in dying because it reflected the inherent worth and dignity of every individual, a central tenet of the faith. Soon after, Barbara found her church home with a Unitarian Universalist (UU) congregation in Portland, Ore.

The following year she joined the UU group writing the aid-in-dying ballot initiative language, and became one of three co-petitioners and its primary spokesperson. Surprising even its authors, the initiative squeaked by to passage in 1994. The law then withstood repeated legal challenges, and voters reaffirmed it by a large margin three years later.

Eighteen years after it took effect, the Oregon Death With Dignity Act is the model for bills in dozens of legislatures and several countries. Extensive data about the law provides indisputable evidence of its safety and benefits. Today, support for such laws is greater than 70 percent nationally.

“Without a passionate engagement with life, I could not do this work. And doing this work enables me to passionately engage with life,” Barbara states to describe how she sustains herself in a job inundated with death.

She balances the demands of her career with healthy, mindful living: a vegetarian and Pilates devotee who gardens, spends time with children and grandchildren, and chooses enriching travel, including to Egypt this spring.

But it takes a special mindset to lead this work for decades — and to provide the emotional lift to staff, supporters and advocates who ride the highs and lows of a social change movement.

Barbara inspires her team with beautiful, motivational statements at key moments: holidays, victories and, of course, deaths. She composed this poignant message for C&C staff in June 2015, after the End of Life Option Act passed the California Senate:

“ … You could not commit your hearts and souls to this work if you were not also willing to get your hearts broken, if you were not willing to put your love for justice and mercy on the line, knowing sometimes the world is unjust and merciless … I’m so proud of how we celebrate together, congratulate each other and revel in our victories as a family. And I am also proud of how we can support and comfort each other if need be.” She grounds herself in the joy and wonder of life. “You have to carry both rapture and grief. You make a life big enough to hold it all,” she says. “I believe the best way to cope with life’s transience is by extracting all the sweetness from every day.

“Some of the worst deaths I’ve witnessed have been people resisting to the end, and suffering terribly. I’ve wondered whether extreme resistance comes from never really living, not loving or laughing enough.”

Barbara officially started with the organization as interim president of Compassion in Dying, one of C&C’s predecessor organizations, in 1996. The annual budget was $173,000. She traveled from her home in Portland, Ore., to work in the organization’s Seattle office several days per week. To economize, she slept on the floor in her sleeping bag. Today, Compassion & Choices has a $17 million annual budget, offices in five states, more than 85 employees and an impressive list of accomplishments.

Like her own career, Barbara sees the future of the organization evolving with opportunities that arise with growing needs of aging and dying Americans, and her contributions are only one part of that. “I strive to apply the talents I have the best way I can every day,” Barbara says. “I am grateful to see results. And I am gratified to see this growing organization and movement. It’s been my privilege to accompany Compassion & Choices on this journey.”

To congratulate Barbara on her 20-year anniversary or read more about her impact, visit CompassionAndChoices.org/Barbara20.