Between 1989 and 1994, in an effort to "improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying," a group of investigators from various disciplines undertook the largest study of death and dying ever conducted in the United States. The project, known as the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), included more than 9,000 patients who suffered from life-threatening illnesses. Patients enrolled in the study had about a 50 percent chance of dying within six months.
The researchers published the results of their study in "A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients" (Journal of the American Medical Association,
TABLE 4.1
Death rates for the 15 leading causes of death, 2001, and percent change, 2000–2001
[Death rates on an annual basis per 100,000 population; age-adjusted rates per 100,000 U.S. standard population]
| Age-adjusted death rate | |||||||||
| Percent change | Ratio | ||||||||
| Rank* | Cause of death (Based on the Tenth Revision International Classification of Diseases, 1992) | Number | Percent of total deaths | 2001 crude death rate | 2001 | 2000 to 2001 | Male to female | Black to white | Hispanic to white non-Hispanic |
| … | All causes | 2,416,425 | 100.0 | 848.5 | 854.5 | −1.7 | 1.4 | 1.3 | 0.8 |
| 1 | Diseases of heart | 700,142 | 29.0 | 245.8 | 247.8 | −3.8 | 1.5 | 1.3 | 0.8 |
| 2 | Malignant neoplasms | 553,768 | 22.9 | 194.4 | 196.0 | −1.8 | 1.5 | 1.3 | 0.7 |
| 3 | Cerebrovascular diseases | 163,538 | 6.8 | 57.4 | 57.9 | −4.9 | 1.0 | 1.4 | 0.8 |
| 4 | Chronic lower respiratory diseases | 123,013 | 5.1 | 43.2 | 43.7 | −1.1 | 1.4 | 0.7 | 0.4 |
| 5 | Accidents (unintentional injuries) | 101,537 | 4.2 | 35.7 | 35.7 | 2.3 | 2.2 | 1.0 | 0.8 |
| 6 | Diabetes mellitus | 71,372 | 3.0 | 25.1 | 25.3 | 1.2 | 1.2 | 2.1 | 1.7 |
| 7 | Influenza and pneumonia | 62,034 | 2.6 | 21.8 | 22.0 | −7.2 | 1.4 | 1.1 | 0.9 |
| 8 | Alzheimer's disease | 53,852 | 2.2 | 18.9 | 19.1 | 5.5 | 0.8 | 0.7 | 0.5 |
| 9 | Nephritis, nephrotic syndrome and nephrosis | 39,480 | 1.6 | 13.9 | 14.0 | 3.7 | 1.5 | 2.4 | 1.0 |
| 10 | Septicemia | 32,238 | 1.3 | 11.3 | 11.4 | 0.9 | 1.2 | 2.3 | 0.8 |
| 11 | Intentional self-harm (suicide) | 30,622 | 1.3 | 10.8 | 10.7 | 2.9 | 4.6 | 0.5 | 0.5 |
| 12 | Chronic liver disease and cirrhosis | 27,035 | 1.1 | 9.5 | 9.5 | 0 | 2.1 | 1.0 | 1.8 |
| 13 | Assault (homicide) | 20,308 | 0.8 | 7.1 | 7.1 | 20.3 | 3.3 | 4.3 | 2.1 |
| 14 | Essential (primary) hypertension and hypertensive disease | 19,250 | 0.8 | 6.8 | 6.8 | 4.6 | 1.0 | 2.9 | 1.1 |
| 15 | Pneumonitis due to solids and liquids | 17,301 | 0.7 | 6.1 | 6.1 | 0 | 1.8 | 1.1 | 0.7 |
| … | All other causes | 400,935 | 16.6 | 140.8 | … | … | … | … | … |
| … Category not applicable. | |||||||||
| *Rank based on number of deaths. | |||||||||
| SOURCE: Elizabeth Arias, et al., "Table C. Percent of Total Deaths, Death Rates, Age-Adjusted Death Rates for 2001, Percent Change in Age-Adjusted Death Rates from 2000 to 2001, and Ratio of Age-Adjusted Death Rates by Race and Sex for the 15 Leading Causes of Death for the Total Population in 2001: United States," in Deaths: Final Data for 2001, National Vital Statistics Reports, National Center for Health Statistics, Hyattsville, MD, vol. 52, no. 3, September 18, 2003 | |||||||||
vol. 274, no. 20, November 22/29, 1995). The SUPPORT investigators hypothesized that increased communication between patients and physicians, better understanding of patients' wishes, and the use of computer-based projections of patient survival would result in "earlier treatment decisions, reductions in time spent in undesirable states before death, and reduced resource use."
Phase I of the study was observational. The researchers reviewed patients' medical records and interviewed patients, surrogates (people who make decisions if patients became incompetent), and patients' physicians. Discussions and decisions about life-sustaining measures were observed.
The researchers interviewed patients, families, and surrogates about the patients' thoughts on cardiopulmonary resuscitation (CPR), their perceptions of their quality of life, the frequency and severity of their pain, and their satisfaction with the care provided. The physicians who acknowledged responsibility for the patients' medical decisions were also interviewed to determine their understanding of patients' views on CPR and how patients' wishes influenced their medical care. The surrogates were again interviewed after the patients' deaths.
Problems with End-of-Life Care
Phase I of SUPPORT found a lack of communication between physicians and patients, showed aggressive treatment of dying patients, and revealed a disturbing picture of hospital death. Of the 4,301 patients, 31 percent expressed a desire that CPR be withheld. But only 47 percent of physicians reported knowledge of their patients' wishes. About half (49 percent) of patients who requested not to be resuscitated did not have a Do Not Resuscitate (DNR) order in their medical charts. Of the 79 percent who died with a DNR order, 46 percent of the orders were written within only two days of death.
The patients' final days in the hospital included an average of eight days in "generally undesirable states"—in an intensive care unit (ICU), receiving artificial respiration, or in a coma. More than a third (38 percent) stayed 10 days in the ICU, while almost half (46 percent) were mechanically ventilated within three days prior to death. Surrogates reported that 50 percent of conscious patients complained of moderate or severe pain at least half the time in their last three days.
Phase II: Intervention Fails to Improve Care
Phase II of SUPPORT, the intervention phase, was implemented to address the shortcomings documented in Phase I. It lasted another two years, and involved patient participants with characteristics similar to those in Phase I. This time, however, the doctors were given printed reports about the patients and their wishes regarding life-sustaining
TABLE 4.2
Death rates, by age, for the 15 leading causes of death, 1999–2001
[Rates on an annual basis per 100,000 population in specified group; age-adjusted rates per 100,000 U.S. standard population. Rates are based on populations enumerated as of April 1 for 2000 and estimated as of July 1 for all other years.]
| Age | |||||||||||||
| Cause of death (Based on the Tenth Revision, International Classification of Diseases, 1992) and year | All ages1 | Under 1 year2 | 1–4 years | 5–14 years | 15–24 years | 25–34 years | 35–44 years | 45–54 years | 55–64 years | 65–74 years | 75–84 years | 85 years and over | Age adjusted rate |
| All causes | |||||||||||||
| 2001 | 848.5 | 683.4 | 33.3 | 17.3 | 80.7 | 105.2 | 203.6 | 428.9 | 964.6 | 2,353.3 | 5,582.4 | 15,112.8 | 854.5 |
| 2000 | 854.0 | 736.7 | 32.4 | 18.0 | 79.9 | 101.4 | 198.9 | 425.6 | 992.2 | 2,399.1 | 5,666.5 | 15,524.4 | 869.0 |
| 1999 | 857.0 | 736.0 | 34.2 | 18.6 | 79.3 | 102.2 | 198.0 | 418.2 | 1,005.0 | 2,457.3 | 5,714.5 | 15,554.6 | 875.6 |
| Diseases of heart | |||||||||||||
| 2001 | 245.8 | 11.9 | 1.5 | 0.7 | 2.5 | 8.0 | 29.6 | 92.9 | 246.9 | 635.1 | 1,725.7 | 5,664.2 | 247.8 |
| 2000 | 252.6 | 13.0 | 1.2 | 0.7 | 2.6 | 7.4 | 29.2 | 94.2 | 261.2 | 665.6 | 1,780.3 | 5,926.1 | 257.6 |
| 1999 | 259.9 | 13.8 | 1.2 | 0.7 | 2.8 | 7.6 | 30.2 | 95.7 | 269.9 | 701.7 | 1,849.9 | 6,063.0 | 266.5 |
| Malignant neoplasms | |||||||||||||
| 2001 | 194.4 | 1.6 | 2.7 | 2.5 | 4.3 | 10.1 | 36.8 | 126.5 | 356.5 | 802.8 | 1,315.8 | 1,765.6 | 196.0 |
| 2000 | 196.5 | 2.4 | 2.7 | 2.5 | 4.4 | 9.8 | 36.6 | 127.5 | 366.7 | 816.3 | 1,335.6 | 1,819.4 | 199.6 |
| 1999 | 197.0 | 1.8 | 2.7 | 2.5 | 4.5 | 10.0 | 37.1 | 127.6 | 374.6 | 827.1 | 1,331.5 | 1,805.8 | 200.8 |
| Cerebrovascular diseases | |||||||||||||
| 2001 | 57.4 | 2.7 | 0.4 | 0.2 | 0.5 | 1.5 | 5.5 | 15.1 | 38.0 | 123.4 | 443.9 | 1,500.2 | 57.9 |
| 2000 | 59.6 | 3.3 | 0.3 | 0.2 | 0.5 | 1.5 | 5.8 | 16.0 | 41.0 | 128.6 | 461.3 | 1,589.2 | 60.9 |
| 1999 | 60.0 | 2.7 | 0.3 | 0.2 | 0.5 | 1.4 | 5.7 | 15.2 | 40.6 | 130.8 | 469.8 | 1,614.8 | 61.6 |
| Chronic lower respiratory diseases | |||||||||||||
| 2001 | 43.2 | 1.0 | 0.3 | 0.3 | 0.4 | 0.7 | 2.2 | 8.5 | 44.1 | 167.9 | 379.8 | 644.7 | 43.7 |
| 2000 | 43.4 | 0.9 | 0.3 | 0.3 | 0.5 | 0.7 | 2.1 | 8.6 | 44.2 | 169.4 | 386.1 | 648.6 | 44.2 |
| 1999 | 44.5 | 0.9 | 0.4 | 0.3 | 0.5 | 0.8 | 2.0 | 8.5 | 47.5 | 177.2 | 397.8 | 646.0 | 45.4 |
| Accidents (unintentional injuries) | |||||||||||||
| 2001 | 35.7 | 24.2 | 11.2 | 6.9 | 36.1 | 29.9 | 35.4 | 34.1 | 30.3 | 42.8 | 100.9 | 276.4 | 35.7 |
| 2000 | 34.8 | 23.1 | 11.9 | 7.3 | 36.0 | 29.5 | 34.1 | 32.6 | 30.9 | 41.9 | 95.1 | 273.5 | 34.9 |
| 1999 | 35.1 | 22.3 | 12.4 | 7.6 | 35.3 | 29.6 | 33.8 | 31.8 | 30.6 | 44.6 | 100.5 | 282.4 | 35.3 |
| Diabetes mellitus | |||||||||||||
| 2001 | 25.1 | * | * | 0.1 | 0.4 | 1.5 | 4.3 | 13.6 | 37.8 | 91.4 | 181.4 | 321.8 | 25.3 |
| 2000 | 24.6 | * | * | 0.1 | 0.4 | 1.6 | 4.3 | 13.1 | 37.8 | 90.7 | 179.5 | 319.7 | 25.0 |
| 1999 | 24.5 | * | * | 0.1 | 0.4 | 1.4 | 4.3 | 12.9 | 38.3 | 91.8 | 178.0 | 317.2 | 25.0 |
| Influenza and pneumonia | |||||||||||||
| 2001 | 21.8 | 7.4 | 0.7 | 0.2 | 0.5 | 0.9 | 2.2 | 4.6 | 10.7 | 36.3 | 148.5 | 685.6 | 22.0 |
| 2000 | 23.2 | 7.6 | 0.7 | 0.2 | 0.5 | 0.9 | 2.4 | 4.7 | 11.9 | 39.1 | 160.3 | 744.1 | 23.7 |
| 1999 | 22.8 | 8.4 | 0.8 | 0.2 | 0.5 | 0.8 | 2.4 | 4.6 | 11.0 | 37.2 | 157.0 | 751.8 | 23.5 |
| Alzheimer's disease | |||||||||||||
| 2001 | 18.9 | * | * | * | * | * | * | 0.2 | 2.1 | 18.7 | 147.5 | 710.3 | 19.1 |
| 2000 | 17.6 | * | * | * | * | * | * | 0.2 | 2.0 | 18.7 | 139.6 | 667.7 | 18.1 |
| 1999 | 16.0 | * | * | * | * | * | * | 0.2 | 1.9 | 17.4 | 129.5 | 601.3 | 16.5 |
| Nephritis, nephrotic syndrome and nephrosis | |||||||||||||
| 2001 | 13.9 | 3.3 | * | * | 0.2 | 0.6 | 1.7 | 4.6 | 13.0 | 40.2 | 104.2 | 287.7 | 14.0 |
| 2000 | 13.2 | 4.3 | * | 0.1 | 0.2 | 0.6 | 1.6 | 4.4 | 12.8 | 38.0 | 100.8 | 277.8 | 13.5 |
| 1999 | 12.7 | 4.4 | * | 0.1 | 0.2 | 0.6 | 1.6 | 4.0 | 12.0 | 37.1 | 97.6 | 268.9 | 13.0 |
| Septicemia | |||||||||||||
| 2001 | 11.3 | 7.7 | 0.7 | 0.2 | 0.3 | 0.7 | 1.8 | 5.0 | 12.3 | 32.8 | 82.3 | 205.9 | 11.4 |
| 2000 | 11.1 | 7.2 | 0.6 | 0.2 | 0.3 | 0.7 | 1.9 | 4.9 | 11.9 | 31.0 | 80.4 | 215.7 | 11.3 |
| 1999 | 11.0 | 7.5 | 0.6 | 0.2 | 0.3 | 0.7 | 1.8 | 4.6 | 11.4 | 31.2 | 79.4 | 220.7 | 11.3 |
TABLE 4.2
Death rates, by age, for the 15 leading causes of death, 1999–2001
[Rates on an annual basis per 100,000 population in specified group; age-adjusted rates per 100,000 U.S. standard population. Rates are based on populations enumerated as of April 1 for 2000 and estimated as of July 1 for all other years.]
| Age | |||||||||||||
| Cause of death (Based on the Tenth Revision, International Classification of Diseases, 1992) and year | All ages1 | Under 1 year2 | 1–4 years | 5–14 years | 15–24 years | 25–34 years | 35–44 years | 45–54 years | 55–64 years | 65–74 years | 75–84 years | 85 years and over | Age adjusted rate |
| Intentional self-harm (suicide) | |||||||||||||
| 20013 | 10.8 | … | … | 0.7 | 9.9 | 12.8 | 14.7 | 15.2 | 13.1 | 13.3 | 17.4 | 17.5 | 10.7 |
| 2000 | 10.4 | … | … | 0.7 | 10.2 | 12.0 | 14.5 | 14.4 | 12.1 | 12.5 | 17.6 | 19.6 | 10.4 |
| 1999 | 10.5 | … | … | 0.6 | 10.1 | 12.7 | 14.3 | 13.9 | 12.2 | 13.4 | 18.1 | 19.3 | 10.5 |
| Chronic liver disease and cirrhosis | |||||||||||||
| 2001 | 9.5 | * | * | * | 0.1 | 1.0 | 7.4 | 18.5 | 22.7 | 30.0 | 30.2 | 22.2 | 9.5 |
| 2000 | 9.4 | * | * | * | 0.1 | 1.0 | 7.5 | 17.7 | 23.8 | 29.8 | 31.0 | 23.1 | 9.5 |
| 1999 | 9.4 | * | * | * | 0.1 | 1.0 | 7.3 | 17.4 | 23.7 | 30.6 | 31.9 | 23.2 | 9.6 |
| Assault (homicide) | |||||||||||||
| 20013 | 7.1 | 8.2 | 2.7 | 0.8 | 13.3 | 13.1 | 9.5 | 6.3 | 4.0 | 2.9 | 2.5 | 2.4 | 7.1 |
| 2000 | 6.0 | 9.2 | 2.3 | 0.9 | 12.6 | 10.4 | 7.1 | 4.7 | 3.0 | 2.4 | 2.4 | 2.4 | 5.9 |
| 1999 | 6.1 | 8.7 | 2.5 | 1.1 | 12.9 | 10.5 | 7.1 | 4.6 | 3.0 | 2.6 | 2.5 | 2.4 | 6.0 |
| Essential (primary) hypertension and hypertensive renal disease | |||||||||||||
| 2001 | 6.8 | * | * | * | 0.1 | 0.3 | 0.7 | 2.4 | 5.8 | 15.5 | 47.7 | 171.9 | 6.8 |
| 2000 | 6.4 | * | * | * | * | 0.2 | 0.8 | 2.3 | 5.9 | 15.1 | 45.5 | 162.9 | 6.5 |
| 1999 | 6.1 | * | * | * | * | 0.2 | 0.7 | 2.2 | 5.5 | 15.2 | 43.6 | 152.1 | 6.2 |
| Pneumonitis due to solids and liquids | |||||||||||||
| 2001 | 6.1 | * | * | * | 0.1 | 0.2 | 0.4 | 1.0 | 2.6 | 10.0 | 45.8 | 189.4 | 6.1 |
| 2000 | 5.9 | * | * | * | 0.1 | 0.2 | 0.4 | 1.0 | 2.5 | 10.3 | 44.5 | 187.6 | 6.1 |
| 1999 | 5.5 | * | * | * | 0.1 | 0.2 | 0.4 | 0.8 | 2.5 | 9.5 | 41.1 | 175.6 | 5.6 |
| *Figure does not meet standards of reliability or precision. | |||||||||||||
| … Category not applicable. | |||||||||||||
| 1Figures for age not stated included in "All ages" but not distributed among age groups. | |||||||||||||
| 2Death rates for "Under 1 year" (based on population estimates) differ from infant mortality rates (based on live births). | |||||||||||||
| 3Figures include September 11, 2001 related deaths for which death certificates were filed as of 10/24/02. | |||||||||||||
| SOURCE: Elizabeth Arias, et al., "Table 9. Death Rates by Age and Age-Adjusted Death Rates for the 15 Leading Causes of Death in 2001: United States, 1999-2001," in Deaths: Final Data for 2001, National Vital Statistics Reports, National Center for Health Statistics, Hyattsville, MD, vol. 52, no. 3, September 18, 2003 | |||||||||||||
TABLE 4.3
Estimated numbers of deaths of persons with AIDS, by year of death and selected characteristics, 1998–2002
| Year of death | ||||||
| 1998 | 1999 | 2000 | 2001 | 2002 | Cumulative through 20021 | |
| Age at death (years) | ||||||
| < 13 | 104 | 102 | 51 | 49 | 33 | 5,071 |
| 13–14 | 9 | 19 | 10 | 5 | 10 | 244 |
| 15–24 | 258 | 232 | 206 | 261 | 190 | 9,507 |
| 25–34 | 3,785 | 3,252 | 2,765 | 2,377 | 1,971 | 139,977 |
| 35–44 | 7,991 | 7,679 | 6,998 | 7,077 | 6,401 | 207,324 |
| 45–54 | 4,784 | 5,004 | 5,082 | 5,202 | 5,395 | 97,027 |
| 55–64 | 1,511 | 1,546 | 1,584 | 1,758 | 1,728 | 31,179 |
| ≥65 | 562 | 622 | 652 | 673 | 641 | 11,340 |
| Race/ethnicity | ||||||
| White, not Hispanic | 6,228 | 5,800 | 5,331 | 5,061 | 4,555 | 223,623 |
| Black, not Hispanic | 9,116 | 9,097 | 8,723 | 8,915 | 8,566 | 185,080 |
| Hispanic | 3,449 | 3,353 | 3,118 | 3,236 | 3,056 | 87,888 |
| Asian/Pacific Islander | 125 | 116 | 107 | 111 | 93 | 3,350 |
| American Indian/Alaska Native | 79 | 79 | 61 | 70 | 72 | 1,424 |
| Exposure category | ||||||
| Male adult or adolescent | ||||||
| Male-to-male sexual contact | 7,120 | 6,615 | 6,098 | 5,971 | 5,418 | 249,198 |
| Injection drug use | 4,735 | 4,501 | 4,145 | 4,129 | 4,038 | 103,714 |
| Male-to-male sexual contact and injection drug use | 1,338 | 1,319 | 1,287 | 1,262 | 1,082 | 36,224 |
| Heterosexual contact | 1,300 | 1,358 | 1,363 | 1,462 | 1,384 | 20,820 |
| Other2 | 222 | 203 | 210 | 177 | 160 | 9,797 |
| Subtotal | 14,715 | 13,997 | 13,104 | 13,001 | 12,083 | 419,754 |
| Female adult or adolescent | ||||||
| Injection drug use | 1,970 | 2,083 | 1,936 | 1,947 | 1,933 | 37,758 |
| Heterosexual contact | 2,100 | 2,140 | 2,134 | 2,280 | 2,197 | 34,661 |
| Other2 | 97 | 104 | 99 | 101 | 95 | 4,087 |
| Subtotal | 4,167 | 4,327 | 4,169 | 4,328 | 4,226 | 76,507 |
| Child(<13 years) | ||||||
| Perinatal | 117 | 122 | 71 | 69 | 59 | 4,882 |
| Other3 | 6 | 8 | 4 | 4 | 4 | 526 |
| Subtotal | 122 | 130 | 75 | 73 | 62 | 5,407 |
| Region of residence | ||||||
| Northeast | 5,681 | 5,814 | 5,089 | 5,263 | 5,419 | 161,971 |
| Midwest | 1,936 | 1,700 | 1,659 | 1,697 | 1,315 | 48,415 |
| South | 7,515 | 7,263 | 7,289 | 7,201 | 6,671 | 168,670 |
| West | 3,092 | 2,967 | 2,624 | 2,490 | 2,259 | 104,559 |
| U.S. dependencies, possessions, and associated nations | 781 | 710 | 687 | 752 | 707 | 18,054 |
| Total4 | 19,005 | 18,454 | 17,347 | 17,402 | 16,371 | 501,669 |
| Note: These numbers do not represent actual cases in persons who died with AIDS. Rather, these numbers are point estimates of cases in persons who died with AIDS that have been adjusted for delays in reporting of deaths and for redistribution of cases in persons initially reported without an identified risk. The estimates have not been adjusted for incomplete reporting. | ||||||
| 1Includes persons who died with AIDS, from the beginning of the epidemic through 2002. | ||||||
| 2Includes hemophilia, blood transfusion, perinatal, and risk not reported or not identified. | ||||||
| 3Includes hemophilia, blood transfusion, and risk not reported or not identified. | ||||||
| 4Includes persons of unknown or multiple race and of unknown sex. Cumulative total includes 304 persons of unknown or multiple race and 1 person of unknown sex. Because column totals were calculated independently of the values for the subpopulations, the values in each column may not sum to the column total. | ||||||
| SOURCE: "Table 7. Estimated Numbers of Deaths of Persons with AIDS, by Year of Death and Selected Characteristics, 1998–2002—United States," in HIV/AIDS Surveillance Report, Centers for Disease Control and Prevention, Atlanta, GA, vol. 14, October 27, 2003 | ||||||
treatments. SUPPORT nurses facilitated the flow of information among patients, families, and health care personnel, and helped manage patients' pain. The SUPPORT investigators were appalled that no improvement in the quality of hospital death occurred.
What Went Wrong?
Dr. Bernard Lo ("Improving Care Near the End of Life: Why Is It So Hard?," Journal of the American Medical Association, vol. 274, no. 20, November 22/29, 1995) believes that the results reported in the SUPPORT study raise more questions than answers. Among other issues, Dr. Lo claims that while Phase I showed poor doctor-patient communication, Phase II, instead of directly addressing this shortcoming, added a third party, the SUPPORT nurses, to do the physicians' job. The issue of inadequate pain control was not resolved, in part because the physicians were not routinely advised of the patients' pain.
Dr. Lo questioned the physicians' apparent lack of interest in patients' preferences regarding CPR. Did the physicians think they knew what was best for the patients and, therefore, ignored information relayed by the nurses? Furthermore, no comparison was ever made between patients' perceived prognosis of their own condition and that made by their physicians. Patients who overestimated the likelihood of recovery might have requested life-sustaining measures, which their doctors might not have deemed appropriate.
Daniel Callahan, former president of the Hastings Center, a think tank for biomedical ethics, questions why the idea of patient empowerment, which includes issues that Americans love—self-determination, choice, patients' rights, the provision of timely scientific knowledge, a legal domestication of death—doesn't appear to work. Callahan believes Americans continue to be ambivalent in their attitude toward death ("Once Again, Reality: The Lessons of the SUPPORT Study," Special Supplement, Hastings Center Report, vol. 25, no. 6, 1995). Medical professionals and laypersons alike are often unsure whether to accept death as a part of life or see it as some kind of misplaced biological occurrence to be fought. In the SUPPORT study, this ambivalence was depicted in physicians' management of terminal care and even in the actions of some patients and their families.
Callahan points out that SUPPORT illustrated the fact that a number of variables influence end-of-life decisions. Some of these are:
- Patients change their minds when it comes to life-sustaining treatments. Some do not really know what they want or what may happen in the course of their illness.
- Doctors may have differing opinions about prognosis, what specific treatments would accomplish, or how to balance their professional judgment and patient preferences.
- Families do not always know what should be done and can be uncertain in interpreting patients' preferences.
Stella Reiter-Theil noted that the SUPPORT study provided evidence regarding an additional variable that influences end-of-life decisions: ageism ("The Ethics of End-of-Life Decision in the Elderly: Deliberations from the ECOPE Study," Best Practice and Research Clinical Anaesthesiology, vol. 17, no. 2, 2003). Reiter-Theil questions whether age is an appropriate criterion by which to allocate health care resources, and she suggests that decisions to provide resources and treatment to patients should be based on their ability to benefit from treatment and not on their age. Yet physicians in the SUPPORT study were less likely to think that older patients wanted care to extend their lives, and were more likely to think that younger patients wanted such care, when this was not necessarily the case.
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