advanced disease through adequate symptom control. This goal is not met for most cancer patients in the United States today. We have words for “survivors” and those in active treatment, but even today, those with advanced disease who are not in active treatment and who are dying are nameless and faceless without a priority.
For at least half of those dying from cancer—most of them elderly and many vulnerable—death entails a spectrum of symptoms, including pain, labored breathing, distress, nausea, confusion and other physical and psychological conditions that go untreated or undertreated and vastly diminish the quality of their remaining days (Donnelly and Walsh, 1995; Phillips et al., 2000). The patient is not the only one who suffers during the dying process. The impact on families and caregivers is still poorly documented, but evidence has begun to be collected demonstrating a heavy and mostly unrelieved emotional and financial burden (Emanuel et al., 2000b). This cannot be ignored within the context of caring for people who are terminally ill.
A major problem in palliative care is the underrecognition, underdiagnosis, and thus undertreatment of patients with significant distress, ranging from existential anguish to anxiety and depression. This situation continues to exist despite the fact that when dying patients themselves have been asked their primary concerns about their care, three of their five concerns were psychosocial: (1) no prolongation of dying; (2) maintaining a sense of control; and (3) relieving burdens (conflicts) and strengthening ties (Singer et al., 1999).
All this is true at the same time that one-quarter of Medicare dollars are spent in the last year of life, and half of that is spent in the last month of life. Living with, and eventually dying from, a chronic illness runs up substantial costs for patient, family, and society, and costs for those dying from cancer are about 20 percent higher than average costs (Hogan et al., 2000). Dying patients are sick, dependent, changing, and needy. Most likely, high costs would be acceptable if patients and families were satisfied with the care provided for those with advanced disease, but few can count on being satisfied. In short, our society is spending a great deal and not getting what dying cancer patients need.
The current inadequacy of palliative and end-of-life care springs not from a single cause or sector of society, but from institutional and economic barriers, lack of information about what can be achieved, lack of training and education of health care professionals, and minuscule public sector investments in research to improve the situation. This is not to suggest that there is no ongoing research on relevant questions or training programs— there are—but the efforts are not coordinated, and there is no locus for these activities in any federal agency. What has resulted is underfunding, a