New Directions: A Roundtable of the Duke Institute on Care at the End of Life

Health care leaders, scholars, and practitioners begin discussions

on improving care for people with advanced illness


The Duke Institute on Care at the End of Life (ICEOL) convened leaders of key home health, hospice, and nursing/long-term care companies from across the country with scholars and researchers from Duke University to continue their collaboration on improving care for people with advanced and life-limiting illness.

Roundtable logoThe gathering, called “New Directions: The Implications of Technology on Care at the End of Life,” was the second of a series of roundtables planned over three years. The two-and-a-half day event was held at  Duke Divinity School Oct. 25-27, 2010.  Corporate participants represented Amedisys Hospice Foundation, HCR ManorCare, UnitedHealth Group, VITAS Innovative Hospice Care, Golden Living, and Voyager HospiceCare Inc. Duke faculty members who engaged the group and helped stimulate discussion included professors of business, divinity, medicine, nursing, pediatrics, and public policy.

Topics explored included the impact of robotics on what it means to give or to receive care; the power of biotechnologies to define mortality; and the intersection of information technologies such as crowd sourcing with the concept of patient-centered care.

“This roundtable allowed us to explore not just the  implications of particular technologies, but whether we can make space to slow down and ask crucial questions,” said Dr. Richard Payne, director of ICEOL and professor of medicine and divinity at Duke. “Can we harness technology for the common good? And if so, what might that look like?”

Keynote speaker Dave deBronkart, a survivor of metatastic kidney cancer who now advocates for patient empowerment as e-Patient Dave, opened the roundtable with a presentation on the ways that patient engagement is transforming healthcare.  

Laurie Strongin, author of Saving Henry, recounted her journey using reproductive technologies in an effort to save the life of her first child, who was born with Fanconi anemia, a rare and fatal disease.

These “real people … real stories,” a hallmark of each roundtable, were followed by panel discussions featuring academic and corporate perspectives from diverse healthcare sectors. Topics ranged from technologies’ impact on ethical decision-making to implications for quality of patient care.

 With each roundtable, said Payne, participants  gain new insight about common challenges as they explore the intersecting, parallel, and competing interests of theory and practice, industry and the academy, and personal, corporate, and cultural goods.

Many of the participants attended the institute’s first roundtable, held May 17-19, 2010, at Duke on the theme of “the common good.” Presenters spoke on topics ranging from the profoundly personal to broad overviews of issues in healthcare reform and delivery.

Claire Wimbush, a Duke Divinity School graduate with cerebral palsy who now serves at St. Martin’s Episcopal Church in Williamsburg, Va., discussed the challenges she faces as a consumer of home health care as well as her understanding of a “theology of disability.”

Author and Wall Street Journal reporter Katherine Rosman spoke about “If You Knew Suzy: A Mother, A Daughter, A Reporter’s Notebook” (2009), the investigative memoir she wrote after her mother died of cancer.

Mike Magee, M.D., a senior fellow for health policy at the Center for Aging Services Technologies of the American Association of Homes and Services for the Aging, made the keynote presentation “Powering Health Care Visions: Taking Advantage of Complexity, Connectivity, and Consumerism.”

Amy Abernethy, M.D., a Duke University professor and director of Duke’s Cancer Care Research Program, and Don Taylor, Ph.D., an assistant professor of public policy as well as an assistant professor of community and family medicine and nursing at Duke, presented “End of Life Savings: Fools Gold of Health Reform?”

Stephen Post, Ph.D., director and founder of the Center for Medical Humanities, Compassionate Care, & Bioethics, Stony Brook University, presented “Reflections on the Common Good.”

By working together, Payne said, roundtable members are positioned improve how care for those with advanced illness is delivered, paid for, and understood across the country.

“Participants are committed to increasing access to quality palliative and hospice care, while preserving the core values of compassionate, holistic care in a fiscally responsible way,” he said. “Together, participants of roundtable have the capacity to forge new directions in health care and to impact the care of millions of Americans.”

Future sessions will focus on communication, leadership and collaboration, quality care, and public policy. The next gathering is scheduled for May 16-18, 2011.

The mission of ICEOL, based at Duke Divinity School, is to create and promote the growth of knowledge and to encourage the application of that knowledge in caring for the whole person at life’s end.

To learn more about the Roundtable initiative, contact Bebe Guill, director of development for ICEOL.