NIH State-of-the-Science Conference onImproving End-of-Life Care
December 6
−
8, 2004William H. Natcher Conference CenterNational Institutes of HealthBethesda, MarylandSponsored by:
•
National Institute of Nursing Research, NIH
•
Office of Medical Applications of Research, NIH
Co-sponsored by:
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Centers for Disease Control and Prevention
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Centers for Medicare & Medicaid Services
•
National Cancer Institute, NIH
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National Center for Complementary and Alternative Medicine, NIH
•
National Institute of Mental Health, NIH
•
National Institute on Aging, NIH
National Institutes of Health
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
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Contents
Introduction......................................................................................................................................1Agenda.............................................................................................................................................5Panel Members...............................................................................................................................11Speakers.........................................................................................................................................13Planning Committee.......................................................................................................................15Abstracts........................................................................................................................................17
I. What Defines the Transition to the End of Life?
A Demographic and Prognostic Approach To Defining the End of Life
Elizabeth Lamont, M.D., M.S.
....................................................................................................19Preferences and Changes in the Goals of Care
Thomas Finucane, M.D.
..............................................................................................................23
II. What Outcome Variables Are Important Indicators of the Quality of the End-of-LifeExperience for the Dying Person and for the Surviving Loved Ones?
Overview of the Domains of Variables Relevant to End-of-Life Care
Betty R. Ferrell, Ph.D., R.N., F.A.A.N.
......................................................................................29Measuring Outcomes Prospectively
Karen E. Steinhauser, Ph.D.
.......................................................................................................33Measuring Outcomes Retrospectively
Joan Teno, M.D., M.S.
.................................................................................................................35Handling Missing Data
Paula Diehr, Ph.D.
.......................................................................................................................39Evidence-Based Practice Center Presentation: Scope, Domains, Measures,and Elements Associated With Satisfaction
Karl Lorenz, M.D., M.S.H.S.
......................................................................................................43
III. What Patient, Family, and Health Care System Factors Are Associated WithImproved or Worsened Outcomes?
Racial, Cultural, and Ethnic Factors
LaVera M. Crawley, M.D., M.P.H.
............................................................................................45
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National Institutes of Health: 2004EndOfLifeCareSOS024Program
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