Sick To Death > Chapter 1 > Serious Chronic Disease in the Last Phase of Life

This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Serious Chronic Disease in the Last Phase of Life

Just a few generations ago, serious illness, like hazardous weather, arrived with little warning, and people either recovered or worsened and died within days or weeks. People had a great deal of trouble from illnesses that are now nearly eradicated - such things as childbirth complications, improperly healed fractures, broken teeth, and parasites. Nevertheless, the calamity that caused death was rarely apparent even a week or two ahead of death. Had they not encountered the specific illness or injury that overtook them, most of those who died could have lived for many years. A working man would die of his first heart attack or a young mother of childbirth fever. Our images of health and disease and our health-care system arose in that setting - where people reasonably thought that death had a single cause and that preventing it was the obvious yardstick of successful health care. The usual life story has changed a great deal, but our outdated health-care system is not equipped to handle its new challenges.

Health care for individuals, along with public health, now prevents or cures many of the illnesses and injuries that abbreviated the lives of our ancestors, effectively allowing most Americans to live into old age. Indeed, most of the burden of illness and use of health-care services now fall in the last phase of life, when people generally deal with established, serious, eventually fatal chronic illnesses for a few years. In their younger years, people have two dominant priorities for health care: prevention and cure of illness. But as people come to the end of a long life today, prevention of serious illness is no longer possible, and neither is cure. Instead, that part of life generates very different priorities, including symptom prevention and relief, support of family members, plans for future care, enhancement of dignity, and completion of life projects.

Most Americans today have long lives; more than 75 percent live past age sixty-five (Hogan et al. 2000). In fact, 83 percent of Americans now die while covered by Medicare (people who are older than sixty-five and also younger people with certain long-term disabilities or renal failure) (Hogan et al. 2000). During the last century, the life span of Americans nearly doubled. In 2000, the average life expectancy was eighty years for American women and seventy-four years for American men, compared to an average of just forty-nine years in 1900 (National Center for Health Statistics 2002, 33). By 2050, life expectancy for women and men will likely increase to eighty-four and eighty, respectively (Institute for the Future 2000).

Back in 1900, only a very few people lingered for years with a disability arising from eventually fatal chronic illness. Most died from infections and accidents, and the time from onset of serious disability to death was measured in hours or weeks, not years. Two serious chronic illnesses caused most long-term, life-shortening disability: tuberculosis and mental illness. Many persons with either condition were segregated into sanatoriums and no longer participated in the life of the wider community. In contrast, Americans today can expect to spend a few years living with serious disability at the end of life, and disability and death will again become a part of everyday life. From the start of the twentieth century to its final decade, the top ten causes of death shifted remarkably, as illustrated in table 1.

Improved public health interventions and medical treatments have meant that very few now die from childbirth, workplace accidents, epidemic infections, or their first heart attack. Instead, Americans live with serious progressive disease for years, and 70 percent of us die from chronic cardiovascular disease, cancers, diabetes, or strokes (Centers for Disease Control and Prevention 1999).

In addition to changes in life span and duration of illness before death, caregiving and treatment too have changed, as reflected in the following comparison (National Center for Health Statistics 2002):

Compared to a century ago, not only are people today less likely to die from acute causes early in life, but they are also less likely to get all their care from family members and more likely to require care outside the home. Some of these changes originated in the broader social commit ment to Medicare and the potential for more treatments in the hospital. In addition, long-term disability has generated greater needs than many families can handle on their own. Especially as the age of serious illness and death has come later, the spouses and children who provide care have also become older and often are disabled themselves.