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

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 perso

Contact: Kelli Marciel
NIH/Office of the Director

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