Introduction

Most people envision living "the good life" in their later years and devote decades to preparing for it. But few people devote much thought to how they might live with a serious or life-threatening disease or to how they will die. Thus, most people do not discuss their feelings or make adequate plans to ensure that their wishes will be followed.

Until a few generations ago, there was very little to think about concerning death and dying. Many people died very quickly after becoming infected or injured. Others died quickly after developing a disease such as coronary artery disease or cancer, because no effective treatments existed.

Much has changed in the last few generations, however. Some people still die of infections or injuries, although far fewer than ever before. And some people still die instantly or very quickly of diseases that strike with little or no warning. For example, a person without any prior evidence of coronary artery disease may die abruptly of a massive heart attack. A person who has had very few symptoms may die very soon after being diagnosed with an aggressive cancer that has already spread widely. However, most Americans now develop one or more serious chronic diseases with which they will live for many years before they die.

More than three fourths of deaths in the United States are due to chronic diseases, such as heart disease (including coronary artery disease and heart failure), cancer, stroke, chronic obstructive pulmonary disease (COPD), and dementia. People are now living much longer after they learn of having a chronic disease. After receiving such a diagnosis, a person's health and ability to function tend to decline gradually, but death is still very often sudden. It becomes difficult to know when a person goes from living with one of these diseases to dying of the disease.

The medical care received by people with life-threatening chronic diseases is, on the whole, successful at helping them live longer. But the health care system has not been nearly as successful at providing support and comfort. The system also falls short of addressing why many treatment decisions are at odds with a person's previously stated wishes or why there is so little advance care planning.

When asked, people with life-threatening chronic diseases often have simple goals. These goals may include the following:

• Relief from pain and other troubling symptoms
• Involvement whenever possible in decisions about their care
• Assurance that their previously stated wishes will be honored and respected when they are no longer able to be involved in decision making
• A sense of completion and relief of any burdens on family and friends.

Family, friends, and health care practitioners of a person with a life-threatening chronic disease can often approximate the person's goals of care. However, in most cases, the person must state his own goals, discuss these goals, and revise them periodically when appropriate. Continued, open communication with family, friends, and health care practitioners about these goals of care can make the difference between a peaceful death and one characterized by unnecessary suffering.

See the sidebar Signs of Approaching Death.

See the sidebar At the Bedside of a Dying Person.