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 http://www.nih.gov/ninr/end-of-life.htm, 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
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: http://www.nih.gov/grants/guide/pa-files/PA-98-019.html. 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.