NIH panel issues State-of-the-Science statement on end-of-life care

December 08, 2004

Despite progress in end-of-life research, important aspects of this life stage remain poorly understood, according to a panel convened by the National Institutes of Health. The panel found that for many Americans, a lack of continuity of care and poor communication between healthcare practitioners, patients, and family members make the end-of-life period a struggle.

In light of the projected dramatic increase in the number of older adults who will require end-of-life care, the panel called for the rapid development of research infrastructure to improve our understanding of what works and what doesn't in different groups of patients, and enhanced resources to deliver quality care to patients and their families at the end of life.

"We can begin by refining and agreeing upon our definitions of 'end of life,' 'palliative care,' and 'hospice'--the terms have been used inconsistently, and often interchangeably, which hinders not just the research enterprise, but effective communication between providers and patients as well" said panel chair Margaret M. Heitkemper, Ph.D., R.N., F.A.A.N., Professor and Chair of the Department of Biobehavioral Nursing and Health Systems at the University of Washington School of Nursing in Seattle.

These and other findings emerged from the NIH State-of-the-Science Conference on Improving End-of-Life Care held December 6-8, 2004, at the NIH campus in Bethesda, Maryland. The conference brought together national and international experts to clarify for healthcare providers, patients, and the general public, key questions regarding the definition of "end of life," the factors that contribute to improved or worsened outcomes for patients and their families at the end of life, and future research directions for improving care at the end of life.

The panel also concluded that the design of the current Medicare hospice benefits limits the availability of the full range of interventions needed by many persons at the end of life. The panel cited as specific problems with the benefit the eligibility requirement of a prognosis of six months or less to death, the forced selection of either skilled nursing or hospice care for patients entering nursing homes from hospitals, and limits on certain therapies such as radiation that may help manage symptoms.

The panel identified in its statement several limitations of the current body of end-of-life research, which, when addressed in future studies, will advance this relatively young area of investigation.

Among the panel's other conclusions and recommendations:

  • Enhanced communication among patients, families, and providers is crucial to high-quality end-of-life care.
  • Recruit under-represented populations to future studies and ensure that these studies are sufficiently powered to evaluate subgroup (e.g., race, ethnicity, age, region, gender) differences, to aid in understanding health disparities in end-of-life care.
  • Create new and support existing networks of end-of-life researchers and well-defined cohorts of patients to facilitate coordinated, interdisciplinary, multi-site studies.

    The panel released its findings in a public session this morning, following two days of expert presentations and panel deliberations. The full text of the panel's draft statement will be available late today at The final version will be available at the same web address in three to four weeks. Statements from past conferences and additional information about the NIH Consensus Development Program are also available at the web site, or by calling 1-888-644-2667.

    The conference was sponsored by the Office of Medical Applications of Research and the National Institute of Nursing Research, of the NIH. Cosponsors included the Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services, the National Cancer Institute, the National Center for Complementary and Alternative Medicine, the National Institute of Mental Health, and the National Institute on Aging.

    The systematic review of the published literature that served as a reference for the state-of-the-science panel and for discussion at the conference was prepared by the Southern California Evidence-based Practice Center, through the Agency for Healthcare Research and Quality's Evidence-based Practice Centers Program. A summary of the report will be available on AHRQ's web site-- A print copy of the summary and the full report are available by sending an e-mail to

    The panel is independent and its report is not a policy statement of the NIH or the Federal Government. The NIH Consensus Development Program, of which this conference is a part, was established in 1977 as a mechanism to judge controversial topics in medicine and public health in an unbiased, impartial manner. NIH has conducted 119 consensus development conferences, and 23 state-of-the-science (formerly "technology assessment") conferences, addressing a wide range of issues.

    The archived webcast of the conference sessions will be available shortly at
    Note to TV Editors: The news conference at 2 p.m. today will be broadcast live via satellite on the following coordinates:

    Galaxy 3 Transponder 07 C-Band
    Orbital slot: 95 degrees West
    Uplink Frequency: 5985 Vertical
    Downlink Freq: 3760 Horizontal
    Audio: 6.2/6.8
    Test time: 1:30 -- 2:00 p.m. EDT
    Broadcast: 2:00 -- 3:00 p.m. EDT

    Note to Radio Editors: An audio report of the conference results will be available after 4 p.m. today from the NIH Radio News Service by calling 1-800-MED-DIAL (1-800-633-3425).

    The NIH comprises the Office of the Director and 27 Institutes and Centers. The Office of the Director is the central office at NIH, and is responsible for setting policy for NIH and for planning, managing, and coordinating the programs and activities of all the NIH components. The NIH is a component of the U.S. Department of Health and Human Services.

    NIH/Office of the Director

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