Two days of discussion, exploration and study, Dignity & Choices provided an opportunity to promote principles and practices that focus on patients. Physicians, social workers, nurses, attorneys and advocates for end-of-life choice filled the National Press Club to hear aspects of end-of-life care rarely discussed and illuminate the way forward.

Jacques d’Amboise can still dance, although not the jumps and pirouettes he once executed for George Balanchine. Electrifying the audience at the opening of the hugely successful Dignity & Choices symposium, he moved with remarkable elegance for a seventy-five year old, and showed even greater grace in discussing his wife Carolyn George’s battle with primary lateral sclerosis.

In the ballroom of the National Press Club, an audience of physicians, social workers, nurses, attorneys and advocates for end-of-life choice laughed as Jacques told stories from their unlikely courtship, and sat in hushed silence as he described Carolyn’s determination to confront death on her own terms. With Jacques and her family beside her, she died at their home in Manhattan last February.

Dr. Elmer Huerta, former head of the National Cancer Society gave an insightful look at attitudes toward cancer, prevention and death in his home country of Peru, and here in the United States. The story of his years of discussions with his mother, and how he fought for her in her final days, illuminated the importance of honest discussions and patient advocacy.

In a meeting room down the hall, people gathered to hear from internist Craig Bowron what health care professionals can do to help patients and families be better prepared to deal with end-of-life issues. But Dr. Bowron was talking about bicycling. Dr. Bowron, who works in St. Paul, Minnesota, remembered biking past lawns with sprinklers spraying in late autumn. “Water is not the problem here,” he remembers thinking. “The sun has gone south, and all the water in the world is not going to turn these brown lawns green again.” He recognized the parallel with his job as a hospitalist, “taking care of the threadworn elderly, those facing an eternal winter with no green in sight.”

Barry Lynn, executive director of Americans United for Separation of Church and State, looked at the Religious Right movement, and how advocates must resist it to preserve autonomy. Lois Uttley of MergerWatch discussed the treatment restrictions imposed by hundreds of health care facilities operated by religious entities. Dr. Timothy Quill of the University of Rochester School of Medicine discussed the promise and perils of aggressive care. 

Rev. Madison Shockley, pastor of the Pilgrim United Church of Christ in Carlsbad, California provided a religious perspective on the theology of compassion.

 

At a luncheon in the ballroom, New York Times health columnist Jane Brody accompanied her discussion with cartoons about death to show how humor can be an important weapon in breaking down our natural barriers to talking about the inevitable. She emphasized the importance of preparing an advance directive, and even more, the importance of communication: making sure your loved ones, doctor, attorney and everyone else know exactly what your end-of-life choices are.

Compassion & Choices President Barbara Coombs Lee joined Jane Brody at the podium to present her with the Hugh Gallagher Award on behalf of our Board. Jane Brody's passion, dedication and perseverance exemplify the qualities embraced by Compassion & Choices. The Hugh Gallagher Award is given annually to a person who has been the most effective in bringing people, especially those of diverse age, race, religion, ethnicity, sexual orientation and persons with disabilities, to greater understanding of our issues and organization.

The two days of discussion, exploration and study were an important step toward establishing principles for patient-centered end-of-life care. As Coombs Lee said, in remarks at the closing of the conference, “To often, the experience of patients gets lost in a flood of tests and treatments that often subvert any effort to navigate a fitting end to a well-lived life. Changing the focus from the disease to the person who has the disease would create radical change indeed.”