that is the second leading cause of death in the United States. While it is the disease that we are “fighting,” our ultimate obligation is to provide the best-quality care to each individual patient, and we must recognize that individual preferences are central to defining the quality of medical care. Health care providers must not only provide the best available clinical care, as desired by patients, but must become adept at helping patients and families make choices about transitions in goals of care. The goal of quality indicators is to measure the extent to which the health care system is succeeding in this at the end of life.
Few, if any, would argue seriously against the current emphasis on prevention and cure in cancer research and treatment. Yet this emphasis should not be allowed to result in inadequate care of the half-million people who die from cancer each year in the United States, whose final needs are for treating symptoms as they approach death. The National Cancer Policy Board, in Ensuring Quality Cancer Care (IOM, 1999), noted the wide disparity between the “ideal” cancer care system and the reality that confronts people with cancer today. The gaps are nowhere as large as they are in the realm of care for the dying.
A central premise of this chapter is that patient expectations and preferences are fundamental to defining the quality of medical care for people with chronic, progressive, and eventually fatal illnesses. Fundamental to any discussion of quality of care, however, are measures of quality that are valid and reliable. This chapter focuses on the status of “quality indicators” for assessing the care of dying individuals, particularly those dying from cancer.
Dying is unlike any other time in a person’s life. A 41-year-old with his first heart attack will most likely value the same health outcomes as others with the same diagnosis: a focus on minimizing the extent of damage to the heart, preserving cardiac function, and reducing the risk of another heart attack. Those dying from chronic, progressive, and eventually fatal illnesses, however, may choose very different courses. The goals of care for a dying person cannot reasonably be anticipated, as they can in the case of a heart attack patient. To care well for a dying person, health care providers must understand that person, his or her needs and expectations, and the disease trajectory itself.
Care of the dying is distinct from other aspects of health care in that it is delivered not just to the patient, but in the context of a “family” (in its most inclusive definition, not restricted to the legal definition of “family”) (WHO, 1990). Ideally, care is “patient focused,” which is defined as care