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tics of the site of death, symptoms and quality of life in the last year of life for patients and their families, patient preferences for and continuity of care in the last year of life, and family burden (physical, psychological, practical, and financial). The purpose of this chapter is to review the existing literature on quality of life at the end of life and quality of care at the end of life in order to identify data elements that would provide useful information about dying in America.
DEFINITION OF “THE END OF LIFE”
Designating a period of time as “the end of life” is a difficult but necessary first step. The conceptual model of a “terminal illness” has driven most current public policy about dying, though dying is not so easily predictable for most Americans. Death more frequently occurs during an exacerbation of an otherwise chronic illness or from a complication associated with a very long slow decline in old age (Lunney et al., 2001).
Although any operational definition of end of life would have to depend upon the dataset used, for the purposes of this report, the end of life is defined very broadly. In this report, the term includes the period of time during which an individual copes with declining health from an ultimately terminal illness—from a serious though perhaps chronic illness or from the frailties associated with advanced age even if death is not clearly imminent. We note that life’s ending can come at any age and time, and that death at a young age is a special sorrow (IOM, 1997). Finally, we note that the terms “family” and “loved ones” will be used interchangeably in this report to connote those who have a close connection to the dying person, regardless of their genetic or legal ties.
CATEGORIES OF DATA RELEVANT TO THE QUALITY OF LIFE AND CARE OF PEOPLE AT THE END OF LIFE
Numerous public discussions and focus group research have helped us to understand what the American public values in the care of the dying (Steinhauser et al., 2000a, b; Teno et al., 2001). Domains relevant to the quality of health care and quality of life include the following:
The management of symptoms;
Spiritual and personal growth;
A familiar setting, surrounded by loved ones;
Understandable information to guide decision making and planning;
Confidence that one will not be a financial, emotional, or physical