measuring outcomes (e.g., relief of symptoms);
measuring of quality of life in end-stage illness;
investigating changes in patient status that influence nutrition and hydration choices in terminal illness; and
documenting costs incurred by patients and family caregivers during end-stage illness.
About two dozen small grants were issued as a result of this program, most funded by NINR, and three by NCI. NINR, which is designated the lead institute for end-of-life care, maintains it as an area of special research interest and has issued “program announcements” calling for proposals in end-of-life care every year since 1998 (NCI is a cosponsor of these announcements but has no up-front financial commitment to funding projects). In 1999, NINR-awarded grants related to end-of-life care totaled $2.3 million, and an addition $1.7 million went to cancer-related research projects with some end-of-life component (Hudgings, 2000). While nursing-related research is needed, the bulk of research needs extend far beyond nursing and are closely allied with cancer treatment, the bailiwick of NCI.
Within NCI, control of pain and other symptoms, psychosocial distress, and end-of-life issues has been associated administratively with cancer control or cancer prevention, which may be limiting the opportunities for broader research. The portfolio of palliative and end-of-life projects is currently within the Division of Cancer Prevention, where it has a very low profile among the many other issues more clearly related to cancer prevention. In fact, no direct mention of palliative or end-of-life care appears on the NCI Web site in association with any unit within the institute (although pain and other symptoms are mentioned in various places). Although a more natural fit, palliative care research has never been included as a specific topic in the Division of Cancer Treatment and Diagnosis (DCTD), which takes in preclinical and clinical drug development and testing. While not specifically excluding drugs for symptom control, the language describing the Cancer Therapy Evaluation Program within DCTD refers to developing and evaluating “anticancer agents” (NCI Web site, October 2000), which would generally be understood as treatments aimed directly at the cancers themselves, not agents for palliative care.
NCI currently designates 37 centers as Comprehensive Cancer Centers (as of December 2000). The designation of “comprehensive” is awarded based on a strong and diverse research program, but current requirements do not include a program in palliative care research.
Researchers are not prohibited from applying to divisions other than the Division of Cancer Prevention for symptom control or end-of-life research (e.g., DCTD), but it appears that appropriate review mechanisms may be lacking, placing such researchers at a competitive disadvantage. For