died of colon or lung cancer had severe pain in the last three days of life. Despite this level of pain, family members reported satisfaction with pain control, which seems to reflect relatively low expectations.
Among 54 outpatient clinics participating in the Eastern Cooperative Oncology Group (ECOG), about one-third of patients with metastatic cancer had pain that limited their function. Of the two-thirds of patients with pain, 42 percent reported that their pain was not adequately treated (Cleeland et al., 1994). Supporting these patient reports, 86 percent of ECOG physicians stated that pain was undermedicated. In a study of nursing homes in five states, 40 percent of patients discharged with a diagnosis of cancer had daily pain (Bernabei et al., 1998). Of even greater concern, one in four of these patients was not receiving any pain medication—not even a World Health Organization (WHO) step 1 drug, such as acetaminophen.
Even in a hospice or palliative care setting, pain remains an important concern (Higginson and McCarthy, 1989; Hockley et al., 1988; Morris, Mor et al., 1986; Turner et al., 1996; Vainio and Auvinen, 1996). Although pain may always be ameliorated by sedation with barbiturates as a last resort (Truog et al., 1992), significant controversy exists over the rate at which a dying cancer patient’s suffering requires deep sedation. Ventafridda and colleagues found that more than half of the dying people treated through a home care program in Italy could achieve palliation of suffering only by sedation (Ventafridda et al., 1986; 1989). Must they sleep before they die? asked an editorial, questioning whether this represents overtreatment (Roy, 1990). A study of dying patients in a palliative care unit in Canada found that only 16 percent of patients required sedation for symptom relief (Fainsinger et al., 1991).
In summary, there is strong evidence that pain is prevalent and too often untreated, despite clear, appropriate guidelines. If guidelines were followed, pain could be ameliorated for up to 90 percent of patients. Because of the high prevalence of pain and because it can be alleviated with proper treatment, pain and its control should be an outcome measure used to judge the quality of end-of-life care for purposes of public accountability.
The NCI, AHRQ, Department of Defense, and Department of Veterans Affairs could consider research and demonstration efforts to implement accountability measures for pain management. In these efforts, the potential unintended consequences of measuring pain management (e.g., more persons being sedated without informed discussion) should be monitored. If warranted by the results, HCFA could require monitoring of pain management as part on ongoing quality reporting from health care institutions that participate in Medicare.