End-of-Life image collage

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 2013, NINR established the Office of End-of-Life and Palliative Care Research (OEPCR), which supports ongoing NINR research efforts in end-of-life and palliative care science, including stimulating research initiatives, creating opportunities for collaborative activities and facilitating interdisciplinary science. 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 EOL PC Resources and Press Releases

NINR Research Program Announcements (PAs)

NINR Archived Inactive Funding Opportunities

  • RFA-NR-14-003. The Palliative Care Research Cooperative (PCRC):  Enhancing Sustainability and Building the Science of Palliative Care (RO1)
  • 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)
  • 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):

EOL Research at other NIH Institutes

EOL Research at other Federal Agencies

General Information

Multimedia:

Preparing Families for the Dying Process: Video featuring NINR-funded researcher Dr. Debra Wiegand of the University of Maryland School of Nursing

The Palliative Care Research Cooperative (PCRC): Video featuring Dr. Jean S. Kutner, co-PI of the PCRC

Visual Decision Pathways: Video featuring NINR-funded researcher Sharon Docherty of RENCI

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)

Science Symposium Begins 20th Anniversary, "Nursing Research: Changing Practice - Changing Lives" - 10/07/2005   (Click title to link to meeting agenda)

Part 1 - NINR Director, Dr. Patricia A. Grady: mp3 | mp4

Part 2 - End of Life Session: mp3 | mp4

Part 3 - End of Life continued: mp3 | mp4

Part 4 - End of Life continued: mp3 | mp4

Part 5 - End of Life continued: mp3 | mp4

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 End-of-Life and Palliative Care Research (OEPCR):
Dr. Jeri L. Miller, Chief, OEPCR
301-594-6152, jmiller@mail.nih.gov

Science/Program Contact, Funding Activities and Research in End-of-Life Science and Palliative Care:
Dr. Donna Jo "DJ" McCloskey , Program Director
301-594-5971, mccloskd@mail.nih.gov

NINR Research Training and Fellowship Opportunities:
Dr. David Banks , Program Director
301-496-9558, banksdh@mail.nih.gov

Note: Some files listed here are PDFs, requiring Acrobat Reader to view. Acrobat Reader can be downloaded here.

Updated Date: November 26, 2012