The National Institute of Nursing Research (NINR) supports research that addresses NINR's strategic focus on end-of-life (EOL) and palliative care science. Because of nursing science’s emphasis on understanding and enhancing the care of persons with chronic, life-threatening conditions across the lifespan, the Director of NIH designated NINR as the lead institute for end-of-life research. This designation, which occurred in 1997, has allowed NINR-supported investigators to advance the science of palliative and end-of-life care and to lead the way in addressing some of the most critical challenges in clinical care today. In 2009 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
Advances in medicine and public health have resulted in longer lifespans, improving the prospects for survival in every age group, particularly the very young and the very old. Improvements in health care have altered the trajectory of many conditions, notably cancer and HIV/AIDS, from acute to chronic conditions. Still, individuals of all ages continue to face protracted courses of decline that require difficult decisions to be made to ensure appropriate intervention, maximize quality of life, and promote dignity of death. Nearly every person will confront such choices, whether on behalf of a child, life partner, parent, grandparent, relative, or close friend. Yet many families and individuals are ill prepared and poorly supported to confidently weigh treatment options and make these important decisions. In addition, health care providers are often inadequately prepared to discuss the varying options in the face of progressive life-threatening illness.
NINR’s palliative and end-of-life interdisciplinary research efforts apply behavioral, biological, and social science strategies to better understand and address the challenges faced by individuals with life-threatening illness and their caregivers. NINR supports research that explores interventions to optimize patient and caregiver quality of life across care settings and cultural contexts. NINR recognizes that high-quality, evidence-based palliative care is a critical component of maintaining quality of life at any stage of illness, not just at the end of life. Specific research topics and activities include: relief of pain, suffering, and distressing symptoms through effective palliative care; understanding and facilitating decision making by patients, caregivers, and providers; and developing new investigators in this area of science.
NINR conducts and supports research in EOL to:
- Improve understanding of the complex issues and choices underlying palliative and end-of-life care
- Develop and test biobehavioral interventions that provide palliative care for chronically ill individuals across the lifespan, including those from diverse populations
- Develop and test strategies to minimize the physical and psycho logical burdens on, and better maintain the health of, caregivers, particularly when the person for whom they are caring nears the end of life
- Determine the impact of providers trained in palliative and end-of-life care on health care outcomes
- Create new communication strategies among clinicians, patients, families, and communities to promote decision making regarding complex treatment and care options in the face of life-threatening illness
NINR-Funded EOL Research Center and EOL Research Press Releases
- Taking Care of Unfinished Business at the End of Life is the Focus of Research Nursing and Psychology Collaborations, Case Western Reserve University
- BEST Center of Excellence for End-of-Life Science, Frances Payne Bolton School of Nursing, Case Western Reserve University
- 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-11-180 (Released 03/24/2011. Expiration date 05/08/2014). Research on Ethical Issues in Biomedical, Social and Behavioral Research (R01)
- PA-11-182 (Released 03/24/2011. Expiration date 05/08/2014) Research on Ethical Issues in Biomedical, Social, and Behavioral Research (R21)
NINR Archived Inactive Funding Opportunities
- PA-10-042. Critical Illness and Injury in Aging (R01)
- PA-10-043. Critical Illness and Injury in Aging (R03)
- PA-10-044. Critical Illness and Injury in Aging (R21)
- PA-10-006. Mechanisms, Models, Measurement, and Management in Pain Research (R01)
- PA-10-007. Mechanisms, Models, Measurement, & Management in Pain Research (R21)
- PA-10-008. Mechanisms, Models, Measurement, and Management in Pain Research (R03)
- 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)
- The NIH End-of-Life and Palliative Care Special Interest Group
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)
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.
- The National Library of Medicine (EOL Medline Plus links)
- Advance Care Planning Preferences for Care at the End of Life (information for planning)
- Planning for LTC
- Finding Care at the End of Life (NIA publication)
- Patient Information on Coping with Cancer
NIH State-of-the-Science Conference on Improving End-of-Life Care 12/6/2004 - 12/8/2004 (Click title to link to meeting report)
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 (2010)
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
Science/Program Contact, Funding Activities and Research in End-of-Life Science and Palliative Care:
Dr. Donna Jo "DJ" McCloskey , Program Director
NINR Research Training and Fellowship Opportunities:
Dr. David Banks , Program Director
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