Carter stresses value of center

Former First Lady Rosalynn Carter helped inaugurate the $13.5 million Duke Institute on Care at the End of Life Thursday, stressing the benefits of providing quality care for the dying.

Carter is the honorary chair of the Last Acts organization, a coalition of 450 groups committed to caring for patients who are nearing the end of their lives. With her involvement in Last Acts, Carter hopes to make palliative care the norm in the medical community.

"We have learned that the [majority of the] general public does not know what palliative care is," Carter said. "It seeks to make the patient's last days and weeks... as comfortable as possible.... It is emerging as the way to care for people that are terminally ill."

The terminally ill will be among the main foci for the new institute, which Duke officials hope will become a national leader in improving care for the dying. Created in January through a $13.5 million gift coordinated by Hugh Westbrook, Divinity '70, the institute is centered in the Divinity School and includes faculty from Arts and Sciences and the School of Medicine.

The institute also announced Thursday that it had received two new gifts totaling $650,000.

In an afternoon news conference, Carter talked about her experiences caring for the sick and dying in her extended family. "My father and grandfather died in pain [while I was young]," Carter said. "I have seen so many people who have died in such great pain."

In recent years, she cared for several ill members of former President Jimmy Carter's family-including his mother, brother and sisters, all of whom had cancer.

"It means a great deal to me," she explained. "I've learned through these experiences of caregiving... that [they] can be rewarding, but [also] extremely difficult."

In two speeches and a panel discussion, experts discussed approaching palliative care on both the medical and spiritual levels.

William May of Southern Methodist University, who has authored several books on the relationship between medical ethics and religion, stressed the importance of recognizing the needs of the patient in end-of-life care.

"Events at the end of life pose for patients the question of their identity," he said.

May introduced three key virtues-patience, courage and prudence-that the patient, the patient's family and the caregivers must have.

Speaking of courage, May remarked that it should be viewed as "passive courage..., [meaning] endurance or perseverance," even if the patient dies.

In his address, May also emphasized the importance of professional education for caregivers.

"Professionals must be educated, not merely trained," May noted. "Healing is an art, not simply an applied science, and healers need practical wisdom."

Carter also touched upon the issue of professional education, explaining that medical courses should include significantly more information about palliative care than they currently contain.

"Most medical schools have some formal course like 'Medical Ethics,' but mostly in the form of lectures," Carter noted.

Panelists at the symposium expressed a very broad range of views about the nature of caregiving, and emphasized the importance of the institute's charge.

One panelist called for members of the baby boom generation to "raise the bar" on end-of-life care.

"[This institute] allows us to get back to the real issues.... What are we prepared to do when suffering persists?" asked Dr. Ira Byock, director of the Robert Wood Johnson Foundation in New Jersey, which promotes palliative care. "We must care for one another in [a manner] that is confident [and] compassionate."

Furthermore, Carter said, it is important to remove the stigma from discussions about death. "One thing in our country is that we don't like to talk about death... [and we should recognize] that it's a natural process," she said. "There's just so much we need to learn... about dying."