included in all government-sponsored Phase III clinical trials (which are usually large, randomized trials), or justification for their exclusion must be documented (NIH, 1994).
Physicians underrefer patients to clinical trials because of concerns about patient age, frailty, inadequate health insurance coverage, ability to travel to the clinical trial center, and other aspects of participation that might be considered a burden to the patient (Foley and Moertel, 1991). Physicians also report being concerned about the amount of time associated with participation in a trial (patient and physician), being uncomfortable with discussions of the uncertainty of trial treatment, and being concerned about changes in the physician's role as a result of trial participation (Farrar, 1991; Kaluzny et al., 1993; Taylor et al., 1984).
Access to clinical trials can be limited by insurance policies. Most insurers do not cover the cost of participation in clinical trials as a matter of policy (e.g., Medicare, most state Medicaid programs, most managed care organizations).
Patients are monitored for recurrent cancer and psychosocial distress for the first several years following their primary and adjuvant treatment when the probability of recurrence and adjustment difficulties is greatest (Schiffer et al., 1997). For most cancers, however, little evidence exists from which to develop guidelines for "appropriate" follow-up procedures, so variations in treatment cannot necessarily be interpreted as better or worse care. Not surprisingly, there is relatively little research on access to care during this phase of disease management, although there are indications that the intensity of follow-up care does vary, at least for some cancers (e.g., lung and colorectal cancers) (Johnson et al., 1996a, b; Virgo et al., 1995). Some of this variation is explained by physician experience and training (Johnson et al., 1996c). One study of the effect of race on the follow-up care of men with prostate cancer in the U.S. military health care system suggests that when health care is uniformly available, follow-up care is similar for whites and African Americans (Moul et al., 1996).
Care at the end of life for patients dying from cancer may include heroic attempts at cure, pain management, treatment for psychological problems, or combinations of these. Caregivers may be the same as those involved in earlier phases of treatment but are likely to include others, among them, hospice caregivers from various disciplines. For most patients, palliation eventually becomes the focus of care. Barriers to the best end-of-life care may stem from financial constraints, and from provider and patient attitudes and knowledge.
The uninsured and inadequately insured may not be able to afford important components of end-of-life care (e.g., pain medication, nutritional supplements, outpatient nursing services)