Approaching Death Improving Care at the End of Life (1997) / Chapter Skim
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2 A Profile of Death and Dying in America
2 A Profile of Death and Dying in America
Pages 33-49
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From page 33... ...
Because many deaths occurred at home, people were likely to care for dying relatives and, thus, to have a fairly personal and direct experience with dying and death. In the United States, death at home in the care of family has been widely superseded by an institutional, professional, and technological process of dying.
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From page 34... ...
Although the shifts in the rates and causes of death over time are, in considerable measure, the result of nonmedical factors such as better public health measures and economic development, they also reflect and, in turn, shape the technological capacities and organizational characteristics of health care including its continued emphasis on acute rather than chronic illnesses. Understanding when, why, where, and how people die and what they think about death and dying can help policymakers ask better questions about whether health care and supportive services are appropriately organized and distributed to fit the needs of dying patients and their families.
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From page 35... ...
compared with a rate of 880.0 per 100,000 in 1995 (Rosenberg et al., 1996~. Between 1940 and 1995, the age-adjusted mortality rate, which takes the aging population into consideration, fell relatively steadily, from 1,076.1 deaths per 100,000 resident population in 1940' to 585.5 deaths per 100,000 resident population in 1980 (Singh et al., 1996)
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From page 36... ...
however, with significant racial differences. In 1995, black males had an age-adjusted death rate (1,006.9 per 100,000 resident population)
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From page 37... ...
Disorders relating to short gestation and unspecified low birth weight were the leading cause of death for black infants and the third most important for white infants, but these rankings do not reveal the disparity in actual death rates of 292.0 and 64.6 respectively (Rosenberg et al., 1996~. Those who die from chronic illness and their survivors will look to care systems for somewhat different kinds of physical, emotional, spiritual, and practical support than those who experience violent or premature death.
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From page 38... ...
Rates per 100,000 live births. Figures are based on weighted data rounded to nearest individual, so categories may not add to totals.
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From page 39... ...
Nursing home death rates increased, particularly for the oldest old (Sager et al., 1989; Brock and Foley, 1996~. Although deaths in residences were not identified as a separate category in national reporting of vital statistics until 1989, McMillan et al.
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From page 40... ...
. Although beneficiaries must have a life expectancy of six months or less to qualify for the Medicare hospice benefit, most patients spend much less time under hospice care.
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From page 41... ...
Chapter 6 urges caution in government actions to penalize hospices caring for patients who outlive their six month prognoses. A recent story in the Boston Globe about a woman who lived more than a year longer than expected under hospice care illuminated the uncertainty of predicting the time of death (Foreman, 1996)
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From page 42... ...
may not. The SLDOL study mentioned earlier reported that on the last day of life, three out of four elderly patients were nonambulatory, and 40 percent had difficulty recognizing family (Brock and Foley, 1996~.
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From page 43... ...
Prior to death, according to data from the established Populations for Epidemiologic Studies of the Elderly, those dying at older ages experience more disability than those dying at younger ages (Gurainick et al., 1991~.5 With the aging of the large baby boom generation, it is evident that these high disability rates "can have grave implications for the total population burden of morbidity and disability in future years" (Gurainick et al., 1991, p.
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From page 44... ...
. The most intensive studies often rely on small, opportunistic samples, especially college students, but more methodologically rigorous surveys rarely focus on dying and death.
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From page 45... ...
When questioned about who people would want to make final choices about their care if they were seriously ill, a 1994 Louis Harris Poll reported that 67 percent of the national sample said that they wanted to make the decisions, but 28 percent wanted their doctor to decide (Medica Foundation, 1994~. Two Gallup Polls, one in 1992 and another in 1996, found 9 out of 10 respondents reporting that they would prefer to be cared for at home if they were terminally ill with six months or less to live (Seidlitz et al., 1995; Foreman, 1996; NHO, 1996b)
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From page 46... ...
A small study of patients seen at a Veterans Affairs medical center found that almost half said they would accept intubation and ventilator support even if the outcome would be persistent mental deficits (Mazur and Merz, 1996~. In one exploratory study investigating patient views of states worse than death, coma, severe dementia, and loss of such functions as the ability to feed oneself were cited as possibly worse than death, but the stability of such views is unknown (Peariman et al., 1993~.
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From page 47... ...
The interventionist bent of U.S. medicine, apparent in clinical practice and medical literature, has been widely noted (see, for example, Fuchs, 1974; Sontag, 1978; Aaron and Schwartz, 1984; Schroeder, 1984; Payer, 1988; McPherson, 1989; Aaron, 1991; Tecker, 1991; Tecker and Emanuel, 1995~.6 Even a century ago, physician Oliver Wendell Holmes, Sr., was asking, "how could a people which has a revolution once in four years, which has contrived the Bowie knife and revolver .
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From page 48... ...
For example, in one public opinion poll, the most frequently expressed fear about death was the fear of being a burden to one's family (Foreman, 1996~. As noted earlier, some critiques characterize American culture as one that, in addition to being strongly individualistic, also is "death denying" and regards "death as a kind of accident, a contingent event that greater prevention, proven technology, and further research could do away with" (Callahan, 1995, p.
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From page 49... ...
Each dimension involves patients, families, and clinicians in decisions that are often painful to make and difficult to implement. The nature and range of these decisions reflect the consequences of a century's worth of changes that have altered when, why, where, and how people die and intensified the need for better support for dying patients and those close to them.
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