NIH Press Release
National Institute of Nursing Research

Thursday, February 12, 1998

Marianne Duffy
Chris Rhatigan

NINR Issues Report on End-of-Life

The National Institute of Nursing Research (NINR) has published a report summarizing the findings of a two-day National Institutes of Health (NIH) workshop, "Symptoms in Terminal Illness." The workshop brought together palliative care experts with basic and clinical scientists in the areas of pain, dyspnea (an uncomfortable awareness of breathing), cognitive disturbances and cachexia (profound weakness and emaciation).

A major conclusion of the workshop, also co-sponsored by the National Institute of Allergy and Infectious Diseases, the National Cancer Institute, the National Institute of Dental Research, the National Institute on Drug Abuse, and the NIH Office of Alternative Medicine, is that end-of-life symptoms occur in combination and are interconnected. For example, cachexia affects dyspnea because the chest muscles become weaker. In another example, opioids, a class of drugs used to treat pain, may also lessen dyspnea but worsen cognitive function. This association underscores the need to study these symptoms together.

According to NINR Director Dr. Patricia A. Grady, the report heralds a commitment to "investing resources in the development of new tools for assessing symptoms and evaluating treatments. These tools will enable us to clarify the extent of the problem and to set national priorities to improve quality of life for those facing terminal illness."

The report, available on the Internet at, also calls for epidemiologic research and basic and clinical studies of common symptoms in terminal illness. Other recommendations include examining ethical issues, such as community and individual preferences about symptom management of dying patients, and the barriers to end-of-life research for vulnerable populations. Economic issues, such as the direct and indirect costs and burdens of symptoms, also need to be addressed.

NINR, which is the leading NIH Institute on end-of-life research, issued a call for grant applications to study end-of-life symptoms. The program announcement, (PA-98-019) Management Of Symptoms At The End Of Life, is available on the Internet at: Co-sponsors include the National Cancer Institute, the National Institute of Allergy and Infectious Diseases, the National Institute of Mental Health, and the NIH Office of Alternative Medicine. While it will address pain, it will also focus on symptoms such as dyspnea, cognitive disturbances and cachexia, which have lagged far behind in research funding.

One reason for the previous lack of funding may be that these symptoms have been regarded as an inevitable part of dying. According to speakers at the workshop there is evidence that these symptoms can be alleviated. Many experts in palliative care believe the real question is not one of inevitability, but rather when and how to intervene. For example, cachexia may be somewhat acceptable to patients and families, especially in the final days before death. However, it can interfere with functioning in the weeks and months before death when intervention might prolong independence.

According to Dr. June Lunney, a scientific program administrator in NINR's Division of Extramural Activities, a major issue is "intervening at the appropriate point in the trajectory of dying to maximize quality of life right up until death occurs".

NIH convened the September research workshop to achieve three principle goals: 1) to summarize the current state of knowledge about the most common symptoms associated with terminal illness; 2) to identify important needs and opportunities for research that would be appropriate for NIH funding; and 3) to begin a process for enhancing interdisciplinary collaboration and interagency collaboration in research in palliative care.

NINR's extensive portfolio in the management of pain and other symptoms, family decision-making for patients who are incapacitated, end-of-life caregiving practices, and the environment of critically ill patients provides an important base of knowledge for end-of-life research.

Established in 1986 as a part of the NIH, the NINR supports research on the biological and behavioral aspects of critical health problems that confront the Nation. Its researchers seek to reduce the burden of illness and disability by understanding and easing the effects of acute and chronic illness. They also improve health-related quality of life by preventing or delaying the onset of disease. Nursing research also improves clinical environments by testing interventions that influence patient health outcomes and reduce costs and demand for care.