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42 VOLUME 49 • NUMBER 1 NURSING OUTLOOK

Nelson et alAcute Care Functional Assessment Begins at the Bedside

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This promises to be a year of change and new challengesthroughout the United States. It is important to capture

opportunities afforded by times of change. It is also impor-tant to maximize the momentum that has been generated byrecent efforts. Among these areas of opportunity for NINRand the nursing research community are health disparities,genetics in nursing, and end of life. My focus for this columnis on end-of-life issues.

End-of-life care is a topic of concern and interest to manyAmericans, as documented by numerous magazine articlesand the recent television series on PBS, “On Our OwnTerms—Moyers on Dying” produced by Bill Moyers. Here atNINR, end-of-life care is an emerging area of science. We arebuilding momentum in the drive to develop this research,which is one of the institute’s areas of research opportunityfor 2001.

The development of an end-of-life research agenda began in1997, when the Institute of Medicine published a reportnoting the public’s concern and significant gaps in scientificknowledge about end-of-life care. Later that year, NINR,joined by other NIH institutes, sponsored a research workshopon “Symptoms in Terminal Illness.” Subsequently, NINRpublished a program announcement (PA) and later a requestfor applications (RFA) to stimulate end-of-life research. Theearly and sustained interest in this research area led to NINR’sdesignation as the lead institute at NIH to promote the scienceof end-of-life care.

Building on these earlier initiatives, in August 2000NINR was joined by the National Cancer Institute, theNational Center for Complementary and AlternativeMedicine, the National Institute of Allergy and InfectiousDiseases, the National Institute of Dental and CraniofacialResearch, and the National Institute on Aging in issuing aprogram announcement, “Quality of Life for Individuals atthe End of Life.” This collaborative effort illustrates the wideswath that end-of-life care cuts across fields of biomedicaland behavioral research and the critical need for end-of-lifecare in many clinical settings. There has been strong early

response to this announcement, which invites clinical or caredelivery studies on end-of-life management of physical andpsychological symptoms, communication between patientsand providers or patients and families, ethics and clinicaldecision making, and caregiver support. The announcementspecifies an interest in research on patients’ end-of-life issuesacross the life span, including neonates in intensive careunits, children with acquired immunodeficiency syndrome,teens with cancer, and young adults with degenerative disor-ders.

NINR is currently funding 22 research studies and 7training and career development awards dealing with end-of-life care. The studies investigate a broad range of topicsacross populations, including hospice and cancer patients,terminally ill patients with acquired immunodeficiencysyndrome, and quality of life in terminally ill elders.

NINR is pursuing other avenues of expanding knowledgeof end-of-life care. We are cosponsoring an Institute ofMedicine study that will investigate pediatric end-of-lifeissues. Recently, NINR organized an NIH–wide specialinterest group on end-of-life issues to better coordinate effortsto advance the science and draw direction from the issues.This past fall, the group organized a conference and openforum, “Ending our Lives—Guiding the Research Agenda,”with presentations by end-of-life experts in the areas of tech-nology, cultural and ethnic issues, palliative care, and ethicalissues. Most recently, NINR participated in an internationalconference, “US-UK Horizons in Palliative Care: HIV, SocialExclusion, and Public Policy,” which discussed the gaps incurrent care delivery systems, future areas of concern, andpotential areas for collaboration and research. Papers from theconference will be published in the Journal of the Royal Societyof Medicine.

NINR is committed to developing the science of end-of-life care to help persons and families attain the highestquality of life possible through the end of their lives. We willcontinue collaborating NIH-wide, nationally, and interna-tionally to move the science forward. �

Patricia A. Grady, PhD, RN, FAAN, Director, NINR, NIH

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