Until the early part of the twentieth century, most Americans died of infectious diseases, many in childhood and middle age. Then, virtually every serious illness, including cancer, spelled a fairly rapid course to death. Those who survived to old age and developed the chronic diseases that the majority of people now die from had shorter trajectories until death, with few experiencing prolonged periods of critical illness leading up to death. Malignancies were identified only when large or in a critical location, and most often, no treatments were available that substantially altered the course. The fact that cancer patients often lingered a few months, often with disturbing appearance, odors, and suffering, undoubtedly contributed to cancer’s special position of abhorrence in the popular mythology. Now, patients with cancer often live much longer because of better prevention, earlier diagnosis, and treatments that prolong survival, resulting in longer periods of adaptation to cancer as a chronic debilitating disease. However, most still eventually die from the cancer.
After World War II, the health care system grew rapidly, with hospitals assuming a place of prominence. The emphasis was on acute care, which led to what has been referred to as the “medicalization” of death, confining it largely to hospitals. By the late 1960s and early 1970s, a grassroots movement had taken hold in the United States that began focusing on the development of volunteer hospice programs, in an attempt to “demedicalize” death. This reached its peak in 1982, when the Medicare hospice benefit was developed. From 1982 to the present, hospice has become more and more available under Medicare (although with the problems alluded to earlier). Over the period 1994 through 1998, 45 percent of all beneficiaries who died from cancer used some hospice services, and for 1998 alone, more than half of all cancer patients who died used hospice services. Although use by people dying from other conditions has grown considerably, far fewer use hospice (e.g., 10 percent of beneficiaries dying of congestive heart failure from 1994 through 1998 used hospice, as did 20 percent of those dying of Alzheimer’s and other dementias) (Hogan et al., 2000).
Even thoroughly tested, effective measures to improve the quality of life of dying patients through symptom control have not been widely adopted; in contrast, the most marginal improvements in chemotherapy to extend life—often at reduced quality—diffuse remarkably quickly. Our desire to evade and avoid the events associated with death pervades society. It could be argued that no institution mirrors society as well as the U.S. Congress. In their recommendations for funding the National Cancer Institute—approaching $4 billion for fiscal year 2001—the House of Representatives