End of Life Research at NIH
Talking Points by Patricia A. Grady, PhD, RN, FAAN

We have all been touched in some way by death, so at some level all of you in this room know the complex issues surrounding the death of a relative or friend.

One thing that has become clear over the last 5 years is that while we all have personal experiences to tell we know very little about the science of how to care for people who are dying.

The seminal work of the Institute of Medicine (IOM) on Approaching Death, published in 1997, explicates the gaps in our scientific knowledge. In the report they identified what people fear most is that they will be technologically over-treated--- leading to prolonged dying– being abandoned, or being untreated for physical distress.

The report included recommendations related to:

• research

• education of health care providers

• and community involvement

Health professionals must commit to improving care for dying patients

NIH and NINR have sponsored initiatives related to each of these three areas. A strong recommendation from this 1997 IOM report was that health professionals must commit to improving care for dying patients, especially in symptom management. At about the same time this report was released, NINR along with the then Office of Alternative Medicine, National Institute of Allergies and Infectious Disease, National Cancer Institute, and the National Institute of Dental and Craniofacial Research responded to this call to action and convened a workshop: "Symptoms in Terminal Illness" in the fall of 1997.

The workshop established the scope of research that needed to be done, and defined potential areas of inquiry within the larger field of end-of-life research. A Program Announcement was released in late 1997 following the the workshop that solicited research on "Symptom Management at End of Life."

To build on the momentum generated by this early initiative, NINR led the effort in publishing in early 1999 a specific request for applications "Research on Care at the End of Life."

This initiative was cosponsored by 7 NIH Institutes and Centers as well as the Agency for Health Research and Quality. We received over 100 applications to this specific request. In collaboration with our cosponsors NIH funded 19 projects. Populations that are being studied include patients with cancer; the elderly; people with advanced stage chronic diseases, such as dementia, kidney failure, chronic obstructive pulmonary disorder (COPD); and the critically ill.

To alert the research community to our continued interest in end of life research we published another program announcement in August of last year entitled "Quality of Life for Individuals at the End of Life." The text of this announcement specifically states our interest in end of life issues across the life span from neonates to the elderly. We continue to have strong collaboration across the NIH with 6 Institutes and Centers cosponsoring this announcement. We are just now starting to see applications in response to this initiative.

Finally, the Center for Complementary and Alternative Medicine sponsored early this year a request for applications on use of Complementary and Alternative Medicine at the end of life for people with cancer and/or HIV. Applications for this initiative will be reviewed in August.

Many components at NIH are funding research relevant to end of life.

NINR’s investment in end of life research

In Fiscal Year 2000 NINR funded primarily research project grants including exploratory projects, traditional research grants and co-funding of research with other agencies. 

We also have a commitment to educate the next generation of scientists in this area of science through pre and post doctoral awards. 

The studies can be categorized into the following areas of science:

• Experience of Dying/Symptoms

• Communication

• Ethics/Decision-making

• Family/caregiving issues

NINR is just beginning to see the results of the studies we are funding.  

Highlights of  findings of study by Virginia Tilden and her colleagues at Oregon Health Sciences University as reported in Nursing Research

• Investigated the effect of advance directives on the family when life sustaining therapies are withdrawn from critically ill people.

• Families who needed to make the difficult decision to withdraw life sustaining therapies from a loved one had stress levels higher than the comparison families.

• The level of stress in the study families was similar to the stress reported by people who had experienced traumatic events such as a ferry boat fire.

NINR has also spearheaded several initiatives to help build the science of end of life.

Established an interest group on end of life research which is currently chaired by our program director for end of life research. The intent was to promote coordination among the NIH Institutes and Centers that are interested in end of life research. The group has since expanded to include representatives from other government agencies such as Health Resource and Services Administration (HRSA) and Agency for Healthcare Research and Quality (AHRQ).

NINR has made a major investment in promoting the science of end of life in children by contributing to a study being conducted by the IOM on the care of dying children and their families.

NINR is planning two invitational conferences 

• Cosponsored by the End of Life Interest Group which will consider future directions for end of life research in older populations

• The second conference sponsored by NINR will explore end of life issues in people with genetic illnesses, including children

We anticipate by 2002 the findings from the studies NINR is currently funding will be available and we can then host a State of the Science Conference

NINR has also reached out to the community in our efforts to develop the Science of End of Life. In March, 2000, NINR lead a coalition project—AHRQ, A Better Chance for Dying (ABCD), Hospice of Greater Washington, and a representative of the Canadian Hospice movement—for promoting the end-of-life agenda. The coalition used the occasion of the Kennedy Center production of the Pulitzer Prize winning play, "W;t", to invite health science researchers, providers, and advocates to the play. "W;t" is a dramatic production about a woman’s battle with cancer and with the researchers who were more absorbed in their work than in their patient.

The well-attended event included guest speakers--leaders in health care and end-of-life research, some of whom participated in a post-production panel discussion. The entire cast also joined in the panel discussion, augmenting the drama and the voices for raising awareness of the need to improve care for the dying.

Another event that NINR spearheaded in conjunction with the newly formed interest group on end of life was a community open forum held at the National Institutes of Health on November 14, 2000.

The format for the forum was drawn from the Bill and Judith Moyers series on end-of-life which was shown nation-wide in October, 2000, attracting a great deal of attention to end-of-life issues. The End of Our Lives-Guiding the Research Agenda was the title of the open forum.

Four speakers used clips from the Moyers series to highlight research issues related to palliative care, ethical issues, use of technology and cultural differences in end of life care. Presentations were followed by a panel discussion with the audience to discuss how to advance the research agenda to improve end-of-life care. A summary of the conference is available on our website along with a synopsis that was published in the NIH Record.

Finally, NINR had the opportunity to collaborate with the American Association of Colleges of Nursing and the Association of Academic Health Centers to produce six, one hour continuing education videotapes targeted to nurses, but relevant for all clinicians, on End of Life Care.

The series is being broadcast over the CenterNet Network to Academic Health Centers across the country and the videotapes are available for purchase. This series is unique in that it brings together the expert nursing educators who developed the end of life nursing curriculum for the Robert Wood Johnson curriculum development project in end of life care and NINR-funded investigators to discuss how to apply the evolving research findings on end of life care into practice.

NINR plans to continue its leadership in end of life research across populations and across settings.

Our National Advisory Council has recommended in concept an area of research opportunity for FY 2003. The broad areas we plan to investigate include…

The workshops and conferences planned for this fall and in 2002 will contribute to refining the topics that we will specifically highlight with this initiative.

Patricia A. Grady, PhD, RN, FAAN, is Director of the National Institute of Nursing Research (NINR) at the National Institutes of Health (NIH)

For more information about NINR end of life and other initiatives please visit the NINR website. 

I would be happy to take questions and discuss with this distinguished group either our current initiatives or your plans for your own work. Thank you.

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