Spotlight on End-of-Life Research

The National Institute of Nursing Research (NINR) supports research that addresses NINR's strategic focus on end-of-life (EOL) and palliative care science. In 1997, the Director of NIH designated NINR to serve as the lead Institute at NIH for End-of-Life Research. To coordinate this effort, NINR has established the Office of Research on End-of-Life Science and Palliative Care, Investigator Training, and Education (OEPC). This page provides information related to EOL research at NINR and across the NIH. Scope of EOL Research at NINR NINR conducts and supports research in EOL to: Identify factors that influence, and develop strategies to improve, decision-making and treatment strategies at the end of life. Validate instruments and refine methodologies to address the complex issues and unique features of end-of-life research for application in diverse groups and settings. Develop interventions to improve palliative care and enhance quality of life for the dying patient and to support family and informal caregivers. Explain factors related to the end of life among underserved groups, including those who are vulnerable and unable to express their preferences near the end of life. Support the development of informatics tools that will facilitate the integration and analysis of data from end-of-life studies. Increase efforts to expand end-of-life research, through research training, interdisciplinary programs, supplemental awards, small grants, and centers or center components. NINR-Funded EOL Research Center and EOL Research Press Releases Center for End-of-Life Transition Research (CEoLTR), University of Illinois at Chicago. Prolonging the Withdrawal of Life Support in the ICU Affects Family Satisfaction with Care. October 2008. Family Members of Patients Who Die in the ICU Report Greater Satisfaction with Communication and Involvement than Family Members of ICU Survivors. November 2007. Improving Communication in the ICU about End-of-Life Care in the ICU Reduces Symptoms of Stress, Anxiety, and Depression in Family Members. February 2007. Research Shows that Distinct Patterns of Functional Decline in the Last Year of Life Indicate the Need for Different Approaches to Palliative Care. May 2003. NINR Research Program Announcements (PAs) PA-09-122 (Released 03/09/2009. Expiration date 05/08/2012). Research on Clinical Decision Making in People with or at Risk for Life-Threatening Illness (R01) PA-09-121 (Released 03/17/2009. Expiration date 05/08/2012). Research on Clinical Decision Making in People with or at Risk for Life-Threatening Illness (R21) PA-07-097 (Released 11/30/2006. Expiration date 01/08/2010). Chronic Illness Self-Management in Children and Adolescents (R01) PA-07-099 (Released 11/30/2006. Expiration date 01/08/2010). Chronic Illness Self-Management in Children and Adolescents (R21) PA-07-098 (Released 11/29/2006. Expiration date 01/08/2010). Chronic Illness Self-Management in Children and Adolescents (R03) NINR Archived Inactive Funding Opportunities RFA-NR-09-004. Interventions to Improve Palliative Care at the End of Life (R01) RFA-NR-08-001. Research on Intervention in Chronic Illness (P01) RFA-NR-07-005. Nursing Science Centers of Excellence in Self-Management or End of Life Research (P30) PA-07-074.  Symptom Clusters in Cancer and Immune Disorders (R01) PA-07-009.  Symptom Clusters in Cancer and Immune Disorders (R21) PA-04-057.  Improving Care for Dying Children and Their Families (R01, R21) PA-00-127.  Quality of Life for Individuals at the End-of-Life PA-98-019.  Management of Symptoms at the End of Life RC1-04-NR-1022. Methods to Enhance Palliative Care and End-of-Life Research (ARRA) NINR Supported Meetings and Events in EOL (listed chronologically) December 2004. NIH State-of-the-Science Conference on Improving End-of-Life Care (Consensus Statement) March 2003.  Agency for Healthcare Research and Quality Advance Care Planning: Preferences for Care at the End of Life at NIH October 2001. Integrative Workshop on End-of-Life Research November 2000. Summary of the proceedings of The End of Our Lives: Guiding the Research Agenda (convened by the NIH End-of-Life Interest Group) EOL Research at other NIH Institutes The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) The National Cancer Institute (NCI) The National Center for Complementary and Alternative Medicine (NCCAM) The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) The National Institute on Aging (NIA) The National Institute of Mental Health (NIMH) EOL Research at other Federal Agencies Agency for Healthcare Research and Quality (AHRQ) Centers for Medicare and Medicaid Services (CMS) Centers for Disease Control and Prevention (CDC) Administration on Aging  U.S. Department of Health and Human Services Assistant Secretary for Planning and Evaluation Office of Disability, Aging and Long-Term Care Policy (ASPE) U.S. Department of Veterans Affairs (VA) General Information: NINR Palliative Care Brochure:This brochure contains important information about palliative care, which can help to ease the pain and symptoms of individuals with serious illnesses while improving quality of life. (Adobe PDF, 2.2 MB) The National Library of Medicine (EOL Medline Plus links) Advance Care Planning Preferences for Care at the End of Life  (information for planning) Own Your Future Long-Term Planning Kit (with information on Advance Planning) Finding Care at the End of Life (NIA publication) Patient Information on Coping with Cancer Reports and Papers: Advance Directives and Advance Care Planning: Report to Congress. U.S. Department of Health and Human Services Assistant Secretary for Planning and Evaluation Office of Disability, Aging and Long-Term Care Policy (ASPE) Frontiers in Aging Research (Elizabeth C. Clipp, RN, PhD, Presentation CANS, 2006) Papers from the NIH State-of-the Science Conference on Improving End-of-Life Care (Grady PA. J Palliat Med, 8 (Suppl.1), 2005)  Summary of the Capital Hill Breakfast Briefing on End-of-Life Care (March 16, 1998) End-of-Life Fact Sheet (2006)  Ethical Challenges of Palliative Care Research (Casarett DJ, Knebel A, Helmers K. J Pain Symptom Management, 25(4), April, 2003) End-of-Life Issues in AIDS: the Research Perspective (Grady PA, Knebel AR, Draper A. J Royal Soc Med, Sept. 94, 2001) Supportive Care Clinical Trials (National Cancer Institute) For More Information: Office of Research on End-of-Life Science and Palliative Care, Investigator Training, and Education (OEPC):  Dr. Jeri L. Miller, Head, OEPC 301-594-6152, jmiller@mail.nih.gov Science/Program Contact, Funding Activities and Research in EOL and Palliative Care: Dr. Kathleen Jett, Acting Program Director 301-594-2154, jettk@mail.nih.gov NINR Research Training and Fellowship Opportunities: Dr. David Banks, Program Director 301-496-9558, banksdh@mail.nih.gov