Health Affairs, 23, no. 3 (2004): 194-200 doi: 10.1377/hlthaff.23.3.194 © 2004 by Project HOPE	New Online   McAllen, TX & Beyond: An Expert Roundtable   Geography & Reform   Medicaid or Insurance Exchange?   Siren Song of New GME   Public Plan Option: Pro & Con

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Health Tracking

TRENDS

Place Of Death: U.S. Trends Since 1980

Abstract

 
Place of death is one indicator of the state of end-of-life care. We examine trends in national death certificate data on place of death from 1980 to 1998. During these years the percentage of Americans dying as hospital inpatients decreased from approximately 54 percent to 41 percent. About 310,000 fewer people died in the hospital in 1998 than if the proportion of inpatient deaths had not changed since 1980. For certain diseases the change was much greater. In 1980 whites and African Americans died in the hospital in equal proportions, but in 1998 whites died as inpatients less often than African Americans. These racial differences and their implications deserve further study.

A key issue in end-of-life care is where people die. The location of death shows where the patient was receiving care at the very end of life and suggests what could be done to improve that care. If most people die in hospitals, then hospital policies and hospital staff training are particularly important. If more people die in nursing homes or skilled nursing facilities, these institutions’ ability to deal appropriately with dying becomes more important. If deaths occur in homes, the quality of home care becomes more pressing.

Also, many people in the end-of-life care community look upon an increase in home deaths favorably, partly because of evidence that a large majority of Americans prefer to die at home.⁵ Some of the most prominent efforts to improve end-of-life care, such as hospice, are meant to facilitate death at home or in homelike surroundings.⁶ Changes in the place of death could indicate whether these efforts have had any impact. This paper seeks to inform discussion of end-of-life care policy issues by examining trends in place of death in the context of changes in the health system.

Study Methods

Top Editor's Notes Study Methods Study Results Discussion And Policy... NOTES

 
The National Vital Statistics System (NVSS) has collected death certificate records from all fifty states since 1980. Death certificates provide information on place of death, as well as cause of death; region/state/county of death; and the age, sex, and race of the deceased. We have analyzed NVSS data for the years 1980–1998.

Prior to 1989, place-of-death category codes used in death certificates were as follows: (1) hospital—inpatient, (2) hospital—outpatient or emergency room, (3) hospital—dead on arrival, (4) hospital—patient status unknown, (5) hospital—patient status not on certificate, (6) other institutions, (7) dead on arrival—hospital name not given, (8) hospital and patient status not stated, and (9) all other reported entries. Because of incomplete coding practices before 1989, a large number of U.S. counties coded most or all of their in-hospital deaths as "hospital—patient status not on certificate," failing to distinguish among inpatient, outpatient, dead on arrival, and emergency room deaths. To create reasonably comparable statistics from 1980 through 1998, we included only data from county-year combinations with fully distinct records of inpatient deaths. In the original data the total number of counties for 1980–1988 was 28,148, covering 18.5 million deaths. We have eliminated all counties with any reported "hospital—patient status not on certificate" deaths, leaving 22,689 counties (81 percent) and 12.7 million deaths (69 percent).

Place-of-death coding has been uniform throughout the United States since 1989. The "hospital—patient status not on certificate" code has been eliminated. In addition to the four well-defined hospital categories (1–4) listed above, nursing home and residential deaths have been identified as such, and all other deaths have been recorded either under a single "other" category or as "place of death unknown." The sample for 1989–1998 includes all of the 22.5 million deaths for the period, adding to a total of 35.2 million observations for 1980–1998. In the results we present here, the "hospital—inpatient" category is used as the basis of analyses.

We studied trends in the proportion of in-patient deaths by age, sex, race, cause of death, and region of death across the time period. Coding for the detailed race of the deceased was uniform in the two subsample periods of 1980–1988 and 1989–1998, so we have grouped the racial information into three main categories: white, black, and other. Although post-1989 data have details on Hispanic origin, the Hispanic population has been included in the "white" category for consistency across years. Causes of death on the certificates are recorded with International Classification of Diseases, Eighth Revision (ICD-8, pre-1989) and ICD-9 (Ninth Revision, post-1989) codes. We have distinguished eight leading causes of death: chronic heart disease, acute myocardial infarction (AMI), cancer, chronic obstructive pulmonary disease (COPD), stroke, pneumonia and influenza, diabetes, and chronic liver disease. All other causes have been grouped as "other." Regional analyses compared western, midwestern, southern, and eastern regions of the United States. Counties were also distinguished using the urban/rural continuum code developed by the U.S. Department of Agriculture’s Economic Research Service.⁷

The only statistical tool in our analysis is testing for the significance of differences between proportions. Because of the number of observations, all differences in proportions reported in Exhibit 1 are statistically significant at p <.001. For finer subgroups reported in the text, the sizes of the samples are still large enough to guarantee that any difference in in-patient death proportions at least as great as 2 percent is statistically significant at p <.05.

Top Editor's Notes Study Methods Study Results Discussion And Policy... NOTES

View larger version (19K): [in this window] [in a new window]   EXHIBIT 2 Decline In Percentage Of Americans Dying As Inpatients, 1980–1998, And Percentage Of U.S. Home And Nursing Home Deaths During The 1990s

View larger version (21K): [in this window] [in a new window]   EXHIBIT 3 Decline In Percentage Of Americans Dying As Inpatients, By Cause Of Death, 1980–1998

In 1980 there was almost no difference in rates of inpatient death between whites and African Americans (Exhibit 4). However, by 1998 whites died in the hospital much less fre quently (40 percent) than African Americans did (48 percent). The proportion of in-hospital deaths declined for both races for every major cause of death, yet for each cause it declined more for whites.

View larger version (17K): [in this window] [in a new window]   EXHIBIT 4 Rates Of Inpatient Death By Race And Sex, 1980–1998

With regard to age, the proportion of inhospital deaths was highest for deceased people ages 65–74 years, 47 percent in 1998 (Exhibit 1). Nursing home deaths increase greatly with advanced age. In 1998, 24 percent of people ages 75–84, and 45 percent of those older than age 85, died in nursing homes. These relationships between age and place of death did not change much during the study period.

Rates of in-hospital death differed around the country. Inpatient death in 1998 was more likely in the Northeast and South and less likely in the West and Midwest (Exhibit 1). Analysis according to how urban a county was (as classified by the urban/rural continuum code) did not point to any trend variation over time. Inpatient deaths declined at roughly the same rate in metropolitan and nonmetropolitan counties.

Discussion And Policy Implications

Top Editor's Notes Study Methods Study Results Discussion And Policy... NOTES

 
During the last two decades of the twentieth century there was a noticeable change in the way Americans died. The hospital ceased to be the setting of death for most Americans. By 1998 more Americans died at home or in a nursing home (45 percent) than died as hospital inpatients (41 percent). Since more than 2.4 million Americans die each year, the substantial shift in the place of death since 1980 means that in 1998 approximately 310,000 people died outside the hospital who would have died in the hospital if the distribution had been the same as it was two decades earlier. Importantly, this shift in place of death occurred relatively steadily during the 1980s and 1990s. This suggests that no single event during that period triggered the change. Reductions in inhospital deaths have been evolutionary, not revolutionary.

This shift out of the hospital has implications for ensuring that dying patients receive good end-of-life care. Moving outside the hospital setting does not ensure a good death. It could represent movement to a skilled nursing facility, where the environment and the issues for quality of dying might be similar to those of a hospital. Hospices, homes, and traditional nursing homes have their own potential problems. Thus, one should conclude not that end-of-life care has necessarily improved but rather that quality of care in places other than hospitals is becoming more important.

Death certificate records indicate that approximately 500,000 people die annually in nursing homes. Nursing home staff need adequate resources and training to fill their increasingly important role in end-of-life care. In addition, as hospices and home care agencies rapidly expand to meet the needs of the growing numbers of Americans dying in their own homes, quality of care must not be allowed to erode.⁸

Racial differences. The growing gap in in-hospital death rates between races was unanticipated. In 1980 the overall rates of inpatient death for whites and African Americans were identical; during the study period the rates for the two races diverged. These data are consistent with data showing that African Americans tend to receive more intensive and expensive care in the final year of life.⁹ These racial differences in place of death may be the result of differences in preferences, with African Americans more likely to choose life-prolonging procedures and less likely to complete advance care directives and agree to do-not-resuscitate (DNR) orders.¹⁰ However, evidence that terminally ill African Americans receive less care from family members and friends could mean that more African Americans depend on hospitals for final care, regardless of their preferences.¹¹ It is also possible that African Americans and other population groups lack access to hospice and home care services in their region. Whether racial differences in care come from different preferences or disparities in access, or both, is an important question for future research.

Cancer. The proportion of in-hospital deaths has fallen farther for cancer than for any other disease. In 1998 only about a third of cancer patients died as inpatients, nearly reversing the ratio of two decades earlier. Furthermore, unlike for other major causes of death, the shift for cancer has been toward residences far more than toward nursing homes. These data, combined with data indicating that as much as a half of cancer patients receive hospice care at the end of life, suggest acceptance of hospice-directed home deaths among oncologists and oncology patients.¹² It appears that special attention to end-of-life care for cancer has altered practices dramatically. One possible explanation for the relatively slight changes for other causes of death, such as COPD and heart failure, is that that impending death from these causes is less predictable. Without very reliable prognoses, it may be more difficult to stop life-prolonging treatment in favor of hospice and other kinds of out-of-hospital palliative care.

Medicare spending. Care for the dying is very expensive, consuming roughly 27 percent of Medicare’s spending for the 5 percent of beneficiaries who die. It has long been hoped that such costs could be reduced by decreasing in-hospital deaths, but the percentage of Medicare spending during the last year of life has not fluctuated much even as in-hospital death has declined a great deal.¹³ The steady decline in hospital deaths, combined with data suggesting no significant change in the payments for individuals who die or the proportion of Medicare expenditures going to them, indicates that reducing out-of-hospital death does not save money at the end of life.¹⁴

Study limitations. The principal limitation of this study is that the outcome measure is site of death, which is not necessarily the same place that the patient spent most of his or her last months. Death as a hospital inpatient does not rule out the possibility that a patient was dying at home up until the final twenty-four hours before death.

The other important limitation is in the quality of the data from the 1980s. Thirty-one percent of deceased people in that decade lived in counties where in-hospital death could not be distinguished from other facility-based death. Hence, unlike the complete 1990s data, the trend data for the 1980s are only an estimate. However, since the 1980s trend data describe just under 70 percent of U.S. deaths during the 1980s, they are probably an adequate representation.

Editor's Notes

Top Editor's Notes Study Methods Study Results Discussion And Policy... NOTES

 
James Flory (jflory{at}cc.nih.gov) is a predoctoral fellow in the Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, in Bethesda, Maryland. Yinong Young-Xu is an epidemiologist in the Section of General Internal Medicine, Boston Medical Center, in Boston, Massachusetts. Ipek Gurol is an assistant professor in the Department of Economics, Bogazici University, Turkey. Norman Levinsky, who died in March 2004, was a professor and associate provost of the Department of Medicine, Boston University School of Medicine, where Arlene Ash is a research professor. Ezekiel Emanuel is chair of the NIH Department of Clinical Bioethics.

The authors thank Kenneth Kochanek of the U.S. Centers for Disease Control and Prevention and two anonymous reviewers.

NOTES

Top Editor's Notes Study Methods Study Results Discussion And Policy... NOTES

 

1. See, for example, M.J. Field and C.K. Cassel, eds., Approaching Death: Improving Care at the End of Life (Washington: National Academies Press, 1997).
2. T.Hoyer, "A History of the Medicare Hospice Benefit,"in A Good Dying: Shaping Health Care for the Last Months of Life, ed. J.K. Harrold and J. Lynn (New York: Haworth Press, Inc.; 1998); and N.L. Cantor, Legal Frontiers of Death and Dying (Bloomington: Indiana University Press, 1987).
3. The three cases were Cruzan by Cruzan v. Director, Vol. 497 U.S. 261 (1990); Washington v. Glucksberg, Vol. 521 U.S. 702 (1997); and Vacco,AttorneyGeneral of New York v. Quill, Vol. 117 S.Ct. 2293 (1997). See also P. Murphy et al., "Description of the SUPPORT Intervention: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments," Journal of the American Geriatrics Society 48, no. 5 Supp. (2000): S154–S161; [Medline]M.E. Baker, "Economic, Political, and Ethnic Influences on End-of-Life Decision-Making: A Decade in Review," Journal of Health and Social Policy 14, no. 3 (2002): 27–39; and the Education on Palliative and End-of-Life Care home page, www.epec.net (14 November 2003).
4. M.A.Sager et al., "Changes in the Location of Death after Passage of Medicare’s Prospective Payment System: A National Study," New England Journal of Medicine 320, no. 7 (1989): 433–439;[Abstract] N.K. Sekhri, "Managed Care: The U.S. Experience," Bulletin of the World Health Organization 78, no. 6 (2000): 830–844; [Web of Science][Medline]G.F. Anderson and P.S. Hussey, "Population Aging: A Comparison among Industrialized countries," Health Affairs 19, no. 3 (2000): 191–203; [Abstract]S.Q. Duffy and D.E. Farley, "Patterns of Decline among Inpatient Procedures," Public Health Reports 110, no. 6 (1995): 674–681;[Web of Science][Medline] and K. Liu et al., Medicare’s Post-Acute Care Benefit: Background, Trends, and Issues to Be Faced, January 1999, aspe.hhs.gov/daltcp/reports/mpacb.htm (14 November 2003).
5. Last Acts, Means to a Better End: A Report on Dying in America Today, November 2002, www.lastacts.org/files/misc/meansfull.pdf (14 November 2003); R.S. Pritchard et al. "Influence of Patient Preferences and Local Health System Characteristics on the Place of Death: SUPPORT Investigators, Study to Understand Prognoses and Preferences for Risks and Outcomes of Treatment," Journal of the American Geriatrics Society 46, no. 10 (1998): 1242–1250; [Web of Science][Medline]Gallup Poll, "Knowledge and Attitudes Related to Hospice Care" (Princeton, N.J.: Gallup Organization, 1996); J. Townsend et al., "Terminal Cancer Care and Patients’ Preference for Place of Death: A Prospective Study," British Medical Journal 301, no. 6749 (1990): 415–417; and National Hospice Organization, "Gallup Poll Reveals First American Attitudes about Terminal Illness and Hospice Care," Press Release (Arlington, Va.: National Hospice Organization, 29 July 1992).
6. Hoyer, "A History of the Medicare Hospice Benefit."
7. U.S. Department of Agriculture, Economic Research Service, "Measuring Rurality: Rural-Urban Continuity Codes," 6 August 2003, www.ers.usda.gov/briefing/rurality/RuralUrbCon (9 February 2004).
8. W.R.Levesque, "Lawsuit Alleges That Hospice Released Private Information," St. Petersburg Times, 2 May 2002; and R. Davis, "The Painful Truth of Hospice Care," USA Today, 20 August 2001.
9. E.J. Emanuel et al., "Managed Care, Hospice Use, Site of Death, and Medical Expenditures in the Last Year of Life," Archives of Internal Medicine 162, no. 15 (2002): 1722–1728;[Abstract/Free Full Text] and C. Hogan et al., "Medicare Beneficiaries’ Costs of Care in the Last Year of Life," Health Affairs 20, no. 4 (2001): 188–195.[Abstract/Free Full Text]
10. L.A. O’Brien et al., "Nursing Home Residents’ Preferences for Life-Sustaining Treatments," Journal of the American Medical Association 274, no. 22 (1995): 1775–1779;[Abstract/Free Full Text] and L.B. Shepardson et al., "Racial Variation in the Use of Do-Not-Resuscitate Orders," Journal of General Internal Medicine 14, no. 1 (1999): 15–20.[CrossRef][Web of Science][Medline]
11. E.J. Emanuel et al., "Assistance from Family Members, Friends, Paid Care Givers, and Volunteers in the Care of Terminally Ill Patients," New England Journal of Medicine 341, no. 13 (1999): 956–963.[Abstract/Free Full Text]
12. M. Agrawal and E.J. Emanuel, "Attending to Psychologic Symptoms and Palliative Care," Journal of Clinical Oncology 20, no. 3 (2002): 624–626.[Free Full Text]
13. J.D. Lubitz and G.F. Riley, "Trends in Medicare Payments in the Last Year of Life," New England Journal of Medicine 328, no. 15 (1993): 1092–1096;[Abstract/Free Full Text] and P.A. Singer and F.H. Lowy, "Rationing, Patient Preferences, and Cost of Care at the End of Life," Archives of Internal Medicine 152, no. 3 (1992): 478–480.[Abstract/Free Full Text]
14. E.J. Emanuel and L.L. Emanuel, "The Economics of Dying: The Illusion of Cost Savings at the End of Life," New England Journal of Medicine 330, no. 8 (1994): 540–544.[Free Full Text]

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