Despite the progress, substantial barriers impede the research needed to advance end-of-life care and symptom control. The main problems and some potential solutions are presented below. The ideas have come from the author, published literature, and clinicians and investigators in the field contacted by the author specifically for this report (see Appendix 8A). The issues are presented in specific categories, but it is clear that the problems and solutions are interlinked. For example, the level of funding depends on a sufficient number of well-trained research investigators and research groups, infrastructure and organizational support, and public advocacy.
THE PROBLEM A low level of research support has been identified as the major barrier to end-of-life and symptom research. In fiscal year 1999, the National Cancer Institute (NCI) spent $24.5 million in extramural funding for all research with components related to palliative care or hospice. Of this total, $18.3 million went to specific projects or programs, and $6.1 million represents fractions of institutional grants. In addition to the research grants, $1.7 million was spent in 1999 on training grants related to end-of-life or palliative care. Altogether, the 1999 NCI expenditure on palliative and hospice care was just over $26 million, or about 0.9 percent of the total 1999 budget of $2.9 billion (see Chapter 1 of this report).
The proportion of congressionally mandated cancer research in this area funded by the Department of Defense (DOD) is also minimal, and the requests for proposals (RFPs) for these programs may actually discourage submissions. The American Cancer Society (ACS) reports that it spends less than 1 percent of its budget on the topics covered here, and it is estimated that other foundations spend the same or less on such research. A major exception has been the substantial investment of the Robert Wood Johnson Foundation in end-of-life issues.
In 1997, industry spent 1.6 billion in cancer-related research (McGeary and Burstein, 1999), primarily in the development and testing of cancer-related drugs and vaccines. With the increasing acceptance of symptom prevention and control, as well as general quality-of-life outcomes as end points for approval of new drugs, there has been a proportional increase in industry investment in the development and clinical testing of drugs for symptom control. Symptom and quality-of-life data are being gathered on large numbers of advanced cancer patients, and new agents of interest are under development. There are, however, many obvious limitations to the product of this kind of effort. The wealth of symptom and quality-of-life