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NINR Examines Care at the End of Life

Nearly 1,000 researchers, health care providers, patients and concerned citizens gathered at the Natcher Bldg. recently to participate in a conference to evaluate the current state of the science regarding care at the end of life and identify directions for future research. The National Institute of Nursing Research and the Office of Medical Applications of Research were the primary sponsors of the meeting.

Dr. Alexis Bakos, program director for end-of-life research at NINR, addresses the conference.

During the first day and a half, experts presented the latest end-of-life research findings to an independent panel. The panel released its findings in a public session on the conference's final day. The group reported that for many Americans, a lack of continuity of care and poor communication between health care 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 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.

The panel identified several limitations of the current body of 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 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 full text of the panel's statement is available at

The CDC, the Centers for Medicare & Medicaid Services, NCI, NCCAM, NIMH and NIA were cosponsors. The Agency for Health Care Research and Quality also supported the conference.
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