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

December 6-8, 2004
Natcher Conference Center
National Institutes of Health
Bethesda, Maryland


General Information


Preliminary Agenda


Travel & Lodging

Program and Abstract book

Conference Webcast

Visitor Security


The National Institutes of Health (NIH) will convene a State-of-the-Science Conference on Improving End-of-Life Care on December 6-8, 2004.

Improvements in medical science and health care have gradually changed the nature of dying.  Death is no longer 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.  Notable among these activities, the National Institute of Nursing Research (NINR), part of the National Institutes of Health,  began a series of research solicitations that focused on issues related to the end of life. Topics of the 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.  Research initiatives by the Robert Wood Johnson and Soros Foundations have also advanced the field. The purpose of this conference is to examine the results of these many efforts and to evaluate the current state of the science.

To facilitate this evaluation, NINR and the Office of Medical Applications of Research (OMAR) at NIH are sponsoring a state-of-the-science conference regarding care at the end of life.  The conference will be held on December 6-8, 2004, at the National Institutes of Health in Bethesda, Maryland.

Specifically, the conference will address 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?

During the first day and a half of the conference, experts will present the latest end-of-life research findings to an independent panel.  After weighing all of the scientific evidence, the panel will prepare a state-of-the-science statement answering the questions above.  On the final day of the conference, the panel chairperson will read the draft statement to the conference audience, and invite comments and questions.

General Information
NIH Consensus Development Conferences bring together biomedical investigators, practicing physicians, consumers, and representatives of public interest groups to evaluate state-of-the-art scientific information and resolve controversial issues in clinical practice.

If you have any questions or if you have any disabilities that may require specific aids or services during the conference, e-mail endoflifecare@air.org.

Conference sessions will be held in the Natcher Conference Center, National Institutes of Health, Bethesda, Maryland.

The cafeteria in the Natcher Conference Center is located one floor above the auditorium on the main floor of the building. It is open from 7 a.m. to 2 p.m., serving breakfast and lunch.

The primary sponsors of this meeting are:

National Institute of Nursing Research, NIH, and the 
Office of Medical Applications of Research, NIH

Preliminary Agenda Coming Soon



Conference Webcast
Visit the
NIH Videocast website for a live webcast of the conference. Viewing the webcast requires RealPlayer software which can be downladed free of charge from the NIH Videocast website.

Visitor Security
The NIH has recently instituted new security measures to ensure the safety of NIH employees and property. All visitors should 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. Conference attendees may want to leave extra bags or personal materials at their hotel to minimize the time needed for inspection. For more information about the new security measures, please visit this website:

Continuing Medical Education (CME) Units

The National Institutes of Health/Foundation for the Advancement of Education in the Sciences (NIH/FAES) is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

Target Audience: 
The targeted audience includes researchers, physicians, nurses, and other allied health professionals whose practice or research interests include family practice, geriatrics, critical care, oncology, neurology, cardiology, psychology, psychiatry, or any aspect of care for patients at the end of life, whether in hospitals, nursing facilities, hospice care settings, or at home. 

Educational Objectives: 
At the end of this activity, participants will be able to recognize how the preponderance of evidence should inform current practice and future research in: 

1. Defining the transition to end of life. 

2. Outcome variables that are important indicators of the quality of the end of life experience for the dying person and for the surviving loved ones. 

3. Patient, family, and health care system factors that are associated with improved or worsened outcomes. 

4. Processes and interventions that are associated with improved or worsened outcomes

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