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Reports, papers, event materials, and other resources about end-of-life and palliative care:

The Palliative Care: Conversations Matter® Campaign: NINR developed this campaign to raise awareness of pediatric palliative care and to help health care professionals and patients discuss palliative care earlier. 

NIHSeniorHealth: Preparing for the End of Life: This module, developed by NINR, describes the physical, mental, and emotional needs of people nearing the end of life and suggests ways to maintain their quality of life, such as hospice and home care. It also addresses the often complex practical concerns that can attend death, including financial issues, advance directives, caregiver support, and more. 

Building Momentum: The Science of End-of-Life and Palliative Care. A Review of Research Trends and Funding, 1997-2010: This report looks at the trends in end-of-life and palliative care (EOL PC) research publications over the past 14 years, including information on federal research awards, funding patterns, and the contributions of public and private investments in EOL PC science.

Palliative Care: The Relief You Need When You're Experiencing the Symptoms of Serious Illness: NINR’s palliative care brochure, available in English or Spanish (see below) describes a comprehensive treatment that helps reduce or eliminate the pain and other distressing symptoms of illness and medical treatments. 

Because of Nursing Research: End-of-Life Care in the ICUBecause of nursing research, doctors and nurses taking care of a dying patient in an intensive care unit (ICU) can communicate better with family members. 

Training and Career Development in Palliative Care and End-of-Life Research: Opportunities for Development in the U.S. (Aziz NM, Grady PA, Curtis JR. J Pain Symptom Management. 46(6):938-46, Dec. 2013)

End-of-Life Fact Sheet. NIH RePORT (2010) 

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 (August 2008)

Council for the Advancement of Nursing Science: Frontiers in Aging Research (Presentation by Elizabeth C. Clipp, RN, PhD, 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)

Science Symposium Begins 20th Anniversary, "Nursing Research: Changing Practice - Changing Lives" (Oct. 2005)

NIH State-of-the-Science Conference on Improving End-of-Life Care (Dec. 2004)

Ethical Challenges of Palliative Care Research (Casarett DJ, Knebel A, Helmers K. J Pain Symptom Management, 25(4), April 2003)

Ethical Challenges of Palliative Care Research (Casarett DJ, Knebel A, Helmers K. J Pain Symptom Management, 25(4), April 2003)

End-of-Life Research: Focus on Older Populations (The Gerontologist, 42, Special Issue III. Oct. 2002)

End-of-life issues in genetic disorders: Summary of workshop held at the National Institutes of Health on September 26, 2001. (Genetics in Medicine, 4, 373-387, 2002)

End-of-Life issues in genetic disorders: Literature and research directors (Genetics in Medicine, 4, 366-372, 2002)

End-of-Life Issues in AIDS: the Research Perspective (Grady PA, Knebel AR, Draper A. J Royal Soc Med, Sept. 2001)

Summary of the Capital Hill Breakfast Briefing on End-of-Life Care (March 1998)

End-of-Life Issues in AIDS: the Research Perspective (Grady PA, Knebel AR, Draper A. J Royal Soc Med, Sept. 2001)

Summary of the Capital Hill Breakfast Briefing on End-of-Life Care (March 1998)

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