State-of-the-Science Conference on Improving End-of-Life Care

ACTION:

Notice.

Notice is hereby given of the National Institutes of Health (NIH) “State-of-the-Science Conference on Improving End-of-Life Care” to be held December 6-8, 2004, in the NIH Natcher Conference Center, 45 Center Drive, Bethesda, Maryland 20892. The conference will begin at 8:30 a.m. on December 6 and 7, and at 9 a.m. on December 8, and will be open to the public.

Improvements in medical science and health care have gradually changed the nature of dying. Death is no longer as likely to be the sudden result of infection or injury but is now more likely to occur slowly, in old age, and at the end of a period of chronic illness. As a result, a demographic shift is beginning to occur that will include an increase in the number of seriously ill and dying people at the same time that the number of caregivers decreases. To meet this challenge, the best that science can offer must be applied to guarantee the quality of care provided to the dying.

The 1997 publication of the Institute of Medicine report “Approaching Death: Improving Care at the End of Life” triggered a series of activities to improve the quality of care and the quality of life at the end of life. Topics of resulting NIH initiatives have included the clinical management of symptoms at the end of life; patterns of communication among patients, families, and providers; ethics and health care decision making; caregiver support; the context of care delivery; complementary and alternative medicine at the end of life; dying children and their families; and informal care-giving. This conference will examine the results of these many efforts and evaluate the current state of the science.

During the first day-and-a-half of the conference, experts will present the latest research findings on end-of-life care to an independent panel. After weighing all of the scientific evidence, the panel will draft a statement, addressing the following key questions:

• What defines the transition to end of life?
• What outcome variables are important indicators of the quality of the end of life experience for the dying person and for the surviving loved ones?
• What patient, family, and health care system factors are associated with improved or worsened outcomes?
• What processes and interventions are associated with improved or worsened outcomes?
• What are future research directions for improving end-of-life care?

On the final day of the conference, the panel chairperson will read the draft statement to the conference audience and invite comments and questions. A press conference will follow to allow the panel and chairperson to respond to questions from the media.

The primary sponsors of this meeting are the National Institute of Nursing Research and the NIH Office of Medical Applications of Research.

Advance information about the conference and conference registration materials may be obtained from American Institutes for Research of Silver Spring, Maryland, by calling 888-644-2667, or by sending e-mail to endoflifecare@air.org. American Institutes for Research's mailing address is 10720 Columbia Pike, Silver Spring, MD, 20901. Registration information is also available on the NIH Consensus Development Program Web site at http://consensus.nih.gov.

Please Note:

The NIH has recently instituted new security measures to ensure the safety of NIH employees and property. All visitors must be prepared to show a photo ID upon request. Visitors may be required to pass through a metal detector and have bags, backpacks, or purses inspected or x-rayed as they enter NIH buildings. For more information about the new security measures at NIH, please visit the Web site at http://www.nih.gov/about/visitorssecurity.htm.