National statistics for three data periods over a 10-year span are presented to show the increasing numbers of elderly who are dying in nursing homes. Several statistical indiccts are presented to describe this trend. This phenomenon underscores the need for more extensive orientation of nursing home personnel toward the management of residents who are confronting death.
National Statistics on Deaths in Nursing Homes Interpretations and Implications Donald K. Ingram, BA, and John R. Barry, PhD1 It is often conceded that the place, the locus, of dying in America is changing to increasingly involve an institutional setting, including hospitals and long-term facilities. As more and more nursing homes have opened up and/or expanded their facilities, they have accommodated larger and larger numbers of aged persons. Consequently it was to be expected that more and more deaths would be occurring in these institutions. However, national data to document this expectation have not been presented nor examined in any detail recently. Such documentation is important for assessing the implications of this phenomenon. Today increasing numbers of researchers and leaders in the field of longterm care are pointing to the major need for a more extensive awareness of, and a better orientation toward, dying and death on the part of nursing home staffs. Being in a relatively new and expanding job field, many of these staffs are not extensively oriented nor trained about the particular management problems related to the dying and death of their patients. Our analysis of national statistics on mortality among nursing home residents provides empirical evidence to underscore the need for such training. The 4% Fallacy National death statistics also provide a meaningful measure of the utilization of nursing homes. Kastenbaum and Candy (1973) were the first to caution about the implications of the " 4 % fallacy." According to them, a misleading perpective regarding the 'Dept. of Psychology, Univ. of Ceorgia, Athens 30602.
Vol.17, No. 4,1977
impact of institutionalization on the aged can occur when there is total reliance upon utilization rates based on data from crosssectional surveys. Such surveys estimate only the number of persons in nursing homes at any one time. The estimate that 4% of the aged population are nursing home residents is not fallacious; it is accurate. However, this rate does not reflect adequately the probability of an individual spending some portion of his life and perhaps dying in this type of institution. A series of longitudinal studies, which would survey a cohort of persons at different points in their lives, would provide the most accurate estimate of this risk. This approach, though, would prove to be exceedingly time-consuming and expensive. In lieu of longitudinal data on utilization, Kastenbaum and Candy (1973) examined the obituaries of aged persons in Metropolitan Detroit to analyze where deaths occur. They found that about 20% of the reported deaths were residents of nursing homes. The data .presented in the present paper corroborate this finding on a national level. The probability of dying while a nursing home resident is much higher than a population utilization rate of 4% would indicate. Availability of National Data on Nursing Homes Deaths The most reliable data for showing trends in nursing home characteristics on a national scale are provided by the National Center for Health Statistics (NCHS). This Federal agency conducts periodic, wide-scope national surveys of long-term care facilities (NCHS, 1968). Most of the statistics to be reported herein are based on data collected in the
303
following three surveys: (1) the Resident Places Survey-1 (RPS-1), conducted from April to June, 1963 (NCHS, 1965a, b); (2) the Resident Places Survey-3 (RPS-3), conducted from June to August, 1969 (NCHS, 1973, 1974); and, (3) the 1973-1974 National Nursing Home Survey (1973-1974 NNHS), conducted from August, 1973 to April, 1974 (NCHS, 1975). Using a combination of mailout and personal interviewing techniques, comprehensive information on the facilities, their residents, and their staffs was collected in these surveys. The only data pertaining to deaths were obtained from one item on the survey questionnaires. This item was a routine inquiry about the number of residents who had died during the calendar year preceding that particular survey. Thus, data on deaths occurring to nursing home residents are available for the following 3 years: 1962, 1968, and 1972. No other information was sought on the characteristics of the dead persons.2 A count was made using the records of the institution; thus, the estimates of the incidence of death are considered to be highly reliable. 3 Throughout this paper, our analyses are limited by the definitions and techniques of data collection that the NCHS employed. MORTALITY AND NURSING HOMES
Trends in Nursing Home Characteristics The compilation of data from the NCHS surveys, shown in Table 1, reveals the growth 'The NCHS count of deaths identified people who died while on the rolls of nursing homes, although some residents may have been in hospitals at the time of their deaths. In all instances, they had not been discharged formally from the nursing homes if they were counted by the NCHS as nursing home deaths. J AII estimates presented from the NCHS surveys had relative standard errors of no more than 6%, most being on the order of 2-3%.
trend in nursing homes.4 It is evident that nursing homes underwent a rapid growth period between 1963 and 1969. It is also apparent that while this growth continued through to 1973-1974, the rate of growth slackened considerably. Although the actual number of nursing homes in operation during 1973-1974 showed only a slight increase over the number reported during 1969, there were still substantial increases in the numbers of residents, beds, admissions, and discharges since 1969. That nursing homes have continued to increase in size is suggested by the data on the number of beds in each home. The average number of beds in 1963 was 39.9; in 1969, it was 55.7; and in 1973-1974 this figure increased to 74.8 beds per facility. In the span of 10 years, nursing homes have nearly doubled their average number of beds as they have expanded to accommodate more than a million persons who resided in these institutions. At the time of the 1973-1974 NNHS, 89% of the residents were aged 65+ (NCHS, in press). Thus the utilization rate computed from data in Table 1 is 4.6% of the aged U. S. population. The estimates of over a million admissions and discharges from nursing homes during the calendar year preceding the 1973-1974 NNHS, however, suggests that many more persons actually experienced a period of residency that the 4.6% rate indicates. In short, there is a tremendous turnover of residents. There are many persons 4 lt should be noted that nursing home is the NCHS classification used to describe a particular type of long-term care facility. According to NCHS definitions, this category refers to long-term care facilities providing a certain level of nursing care; and, as such, it excludes facilities which primarily provide personal or custodial care. Although the RPS-1 and RPS-3 collected information on personal care homes, the data in Table 1 have been adjusted to exclude any reference to these types of facilities. The 1973-1974 NNHS did not attempt to survey personal care homes.
Table 1. Trends in Selected Characteristics of Nursing Homes. Data Period Selected Characteristics (Number) Nursing homes Residents Beds Admissions" Discharges" Resident days of care" Beds per nursing home Residents aged 65 + /per 100 U.S. population aged 65 + * Deaths"
1963
1969
% Change
1973-1974
Between 1963 & 1969
Between 1963 & 1973-74
Between 1969 & 1973-74
12,800 457,050 510,180 358,480 339,260 — 39.9
15,340 778,290 854,910 946,020 872,250 256,332,490 55.7
15,700 1,075,800 1,174,800 1,110,800 1,077,500 368,906,000 74.8
19.8 70.3 67.6 163.9 157.1 — 39.6
22.7 135.4 130.3 209.9 217.6 — 87.5
2.3 38.2 37.4 17.4 23.5 43.9 34.3
2.3 139,390
3.6 296,270
4.6 327,400
56.5 112.5
100.0 134.9
27.8 10.5
"Estimate was based on data collected during the calendar year preceding the survey. *Base of rates were derived from estimates of the U. S. Bureau of the Census (1974).
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entering and leaving this population during the course of a year. The number of resident days of care probably provides a better picture of the actual utilization of nursing homes. This estimate represents the sum of daily patient censuses during the calendar year preceding the survey. What proportion of the aged population spends some time in a nursing home during any one year? In lieu of data from longitudinal surveys, it may suffice to ask how much greater is this proportion than that suggested by the population rate of 4.6%. As proposed by Kastenbaum and Candy (1973), death statistics can assist in answering this question. Trends in the Incidence of Nursing Home Deaths
A recently completed analysis of data from the 1973-1974 NNHS has provided an estimate of the number of nursing home residents who died during the year preceding that survey (NCHS, in press). During 1972 the number of nursing home deaths was estimated to be 327,400. This number is evidence of a continuing, upward trend of this phenomenon. As can be seen in Table 1, the number of deaths of nursing home residents more than doubled from 1962 to 1968. Although this dramatic increase slowed to a 10.5% rise between 1968 and 1972, the trend was still clearly an upward one. In Table 2 the total numbers of deaths have been converted to several different rates in order to assess the incidence patterns and impact of nursing home mortality. By computing nursing home deaths as a proportion of the total U.S. deaths for the 3 data years, it can be seen that these institutions are conTable 2. Trends in the Incidence of Nursing Home Death. Number of Deaths per
Data period 1962 1968 1972
100 U.S. deaths" 7.9 15.4 16.7 10.5 19.8 21.1 100 U.S. deaths, aged 55 + ° Nursing home* 10.9 19.3 20.9 10 beds" 2.7 2.8 3.5 1,000 U.S. population, aged 55 + c 4.1 8.2 7.9 100 residents* 30.5 38.1 30.4 41.1 34.0 30.4 100 discharges* 42.2 32.4 100 resident years of care — "Base of rates were derived from data found in the following publications: (NCHS, 1964; NCHS, 1971; NCHS, 1976). *Base of rates are estimates obtained at time of survey during succeeding year/s. 'Base of rate was derived from estimate of the U.S. Bureau of the Census (1974).
Vol. 17, No. 4,1977
fronting an increasing load olf the total burden of mortality in the country. The rate doubled between 1962 and 1972. The proportionate mortality figures are even higher if it is assumed that all nursing home deaths occurred to residents aged 55+. 5 Thus, by computing nursing home deaths as a proportion of the total U.S. deaths occurring to persons aged 55 + , the estimate of 21.1% obtained for 1972 is quite comparable to the figures which Kastenbaum and Candy (1973) calculated for Metropolitan Detroit during 1971. Corroborating theirs, our estimate also suggests that about 1 out of 5 persons who died in the U. S. during 1972 aged 55+ died while a resident of a nursing home. As argued by Kastenbaum and Candy (1973), this rate is evidence of a much higher utilization rate of nursing homes than the cross-sectional population estimate of 4.6% implies. The mortality load confronting the individual facility can be estimated by dividing the number of deaths during a calendar year by the number of nursing homes in operation at the time of each survey. For example, during 1972 nursing homes averaged about 21 deaths per facility annually, or nearly 2 deaths every month. As shown in Table 2, this rate increased markedly between 1962 and 1972 with the greatest increase occurring between 1962 and 1968, This average, however, does not take into account the size of the facility. Another statistic reflecting the relative impact of mortality on the individual facility was computed by dividing the number of deaths during a calendar year by the number of beds maintained at the time of each survey. This rate accounts for the size of the facility. During 1972 there were 2.8 deaths for every 10 beds maintained in nursing homes. Table 2 indicates that this parameter increased between 1962 and 1968 and then decreased between 1968 and 1972. This decrease does not conflict with the increase in the death rate per nursing home, since it can be noted in Table 1 that the number of facilities increased relatively little (2.3%) between 1969 and 1973-1974, while the number of beds increased substantially (37.4%). The last four rates presented in Table 2 describe the risk of nursing home mortality in relation to the individual, as a member of the 'This is a fairly safe assumption, since the RPS-3 and the 1973-1974 NNHS estimated that only 5% of all residents were under 55 years of age.
305
general U.S. population and as a member of the nursing home population. The rate of nursing home deaths during 1972 was 8.2 deaths per 1,000 persons aged 55+ in the country at that time. This statistic, too, was double what it had been in 1962; but it has changed relatively little since 1968. The death rate of residents within the nursing home population was computed in several different ways. One way was to divide the number of deaths during a calendar year by the number of residents estimated at the time of each survey during the succeeding year. As depicted in Table 2, this death rate per 100 nursing home residents increased between 1962 and 1968 and then decreased between 1968 and 1972. As a measure of actual risk to the nursing home resident, though, this rate may be unreliable for two reasons. First, its numerator and denominator are estimates from two different years. Second, the high degree of resident turnover in nursing homes complicates the problem of determining the true population at risk. The death rate in nursing homes can also be computed as a proportion of all discharges (alive and dead). The trend in this rate observed in Table 2 would suggest that mortality in nursing homes has declined since 1962. However, this rate can be misleading because it, too, relies upon estimates from two different years and it does not account for changes in turnover which are reflected in the estimates of admissions and discharges. As shown in Table 1, the number of total discharges between 1963 and 1973-1974 increased 218%, while the number of deaths (dischargees who were dead) increased by 135%. This disparity can account for the decrease in the death/discharge rate. Discharges due to death probably are independent of the reasons for the great increase in live discharges from nursing homes. In order to avoid the aforementioned problems of interpretation, an incidence rate estimating the number of deaths per 100 resident years of care was computed in an attempt to assess the true risk of mortality in the nursing home population during 1968 and 1972. The base of this rate was the total number of resident days of care during the calendar year preceding the survey, divided by 365 to convert to resident years of care as the unit of exposure. In effect, this conversion provides an artificial estimate of the population in which no turnover occurs. This rate is more valid 306
than deaths per 100 residents because these data were obtained for the same two time periods, and they account for the actual time at risk, or the exposure, of the affected population. Information on resident days of care was not available for 1962, however. As presented in Table 2, the rate for 1972 was 32.4 deaths per 100 resident years of care. This was a clear decrease from the rate of 42.2 deaths per 100 resident years of care estimated for 1968. These death rates for the nursing home population can be compared with the general death rates of the U.S. population aged 55 + during the same 2 years. Although the denominators for these mortality rates are estimated differently, such a comparison is valid. This is because the statistical rationale used to compute general population rates is to take the midyear estimate of the population size as the denominator and the number of deaths occurring during the entire year as the numerator. Using the midyear population size is, in essence, an attempt to account for turnover in the population during the year. In effect then, it, too, is an estimate of personyears, comparable to the estimate of resident years for the nursing home population. During 1968 the mortality rate for persons aged 55+ in the country was 4.0 deaths per 100 in this age group, and it was 3.9 deaths per 100 persons aged 55+ during 1972 (NCHS, 1971; NCHS, 1976). In comparison, the death rate per 100 resident years of care in the nursing home population was eight to ten times higher than for the general population during the same years. From these data, then, it is clear that the mortality risk confronting nursing home residents is very much higher than that confronting older persons in general. Implications for Nursing Home Planning and Policy
Over the last decade an intensive national effort, sponsored by Federal and state governments, as well as by the industry, has been made to upgrade the status of nursing homes in the nation's health care system. A primary objective was to change their image as way stations for the old and indigent en route to the grave. As implemented by Medicare and Medicaid legislation, the concept of the extended care facility exemplified a new emphasis on convalescent care and on restorative therapy and rehabilitation. The Gerontologist
The national statistics on nursing home mortality, which we have analyzed, appear to contradict the attempt to change the public image of these institutions as places where people go to die. Indeed, nursing homes are actually confronting an increasing proportion of the nation's total mortality. On the other hand, there is evidence that this trend had begun to slacken somewhat by 1972 following a dramatic increase between 1962 and 1968. Furthermore, the mortality rate, as a measure of the risk of death within the nursing home population, actually declined between 1968 and 1972. Since there are no other national data available on the characteristics of the persons dying in nursing homes, it is difficult to speculate on the causes of these trends. Additional research, involving longitudinal study, could prove to be very valuable in this regard. It would be of particular interest to determine the factors involved in the variation of death rates across nursing homes and the factors associated with actual mortality risk. Our objective in presenting the national statistics available on nursing home mortality, however, was not to discuss their etiology. Instead our primary desire is to stress the implications of the statistics which describe the increasing numbers of deaths. An essential question to be considered is whether nursing homes are planning and preparing to meet this increase. In his review of the Western approach to death and dying, Morison (1973) contended, A high proportion of the patients in nursing homes are destined to die there or be removed only at the last minute for intensive care, yet few of these institutions appear to have given much thought to the special problems of the dying. We strongly feel that some orientation about death and the problems of dying people must become a part of the formal orientation and background of all nursing home personnel. Although we will not present a detailed outline of the kinds of information of which such staffs should become aware, we can suggest the broad areas which deserve attention. First and foremost, such staff should receive some person-to-person exposure to people who are dying. While we can read about death and, thus, experience it Vol. 17, No. 4,1977
vicariously, there is no substitute for interacting with a dying person. Staff should be encouraged to persist in this experience until they begin to feel at ease and able to focus on the dying person more than on their own feelings. Typical problems which the dying person faces can be discussed in groups and occasionally even with dying patients themselves. Possible ways to interact with the dying patient about his problems can be roleplayed and finally tried out with a dying person as well as discussed with an experienced supervisor. Finally, in order to feel comfortable in facing such problems, one must be helped to face and resolve his own fears of death. The staff must learn to interact not only with the dying resident but also with his family and friends. Guidelines for dealing with requests for information can be developed. All staff should be made aware of the guidelines, how to implement them, and when exceptions can be made. The need for providing nursing home staff with this type of training has been underscored repeatedly by the research available on staff attitudes toward death and dying. In their critical review of the research in this area, Schultz and Aderman (1976) concluded that there was ample evidence that physicians and nurses alike often avoid, and even neglect, the dying patient. In her study of the attitudes of nursing home aides, Howard (1974) found that work experience in a nursing home appeared to encourage avoidance of death. In an unpublished survey recently conducted among nursing home personnel in the State of Georgia, Thorson (1976) noted that only about a third of those polled indicated any interest at all in a brief orientation program "dealing with the dying patient and his family." Of the 28 topics listed, only two were of less interest to those who were surveyed than death and dying. These findings might be juxtaposed with those studies which have found that most dying patients eventually want to discuss their impending deaths in an open, honest manner (Kubler-Ross, 1969; Saunders, 1969). In the face of this wish, the general reaction of most helpers has been to avoid the subject of death and its eventuality. Indeed, it is apparent that many helpers are in fact exposed to dying persons; but rather than utilizing this exposure as a positive learning experience,
307
they more often view it as a negative experience and one to be avoided in the future. We are not recommending that staff become preoccupied with death. Rather we believe that they must learn not to avoid its consideration and to face the event openly. Death must come to be viewed as a natural phenomenon, one that we will all experience. In this way, it may be possible to restore some of the dignity that the final stage of life has lost in the institutional setting. Many of the taboos surrounding the subject of death are slowly being removed as evidenced by the appearance of increasing numbers of articles, lectures, and courses. In our opinion, it is unlikely that this new attitude has genuinely affected working routine in nursing homes. As Wershow (1976) has emphasized, there are instances of heavily subsidized research programs in large, nonprofit geriatric centers which may have had the effect of updating training programs in regard to this subject. He suggested, though, that such pilot programs, cannot be considered representative of the "real world" of the proprietary nursing homes, which usually have different patient populations, different levels of professionalism on the staff, and financial constraints not affecting the model geriatric center. It is evident that death in an institution is becoming an American way of life. According to trends in the national statistics, nursing homes in general must be prepared to handle an increasing mortality load and the responsibilities attendant to this phenomenon. References
Howard, E. The effect of work experience in a nursing home on attitudes toward death held by nurse aides. Cerontologist, 1974, 14, 54-56. Kastenbaum, R. S., & Candy, S. The 4% fallacy: A methodological and empirical critique of extended care facility program statistics. International journal of Aging & Human Development, W73,4, 15-21. Kubler-Ross, E. On death and dying. New York: Macmillian, 1969. Morison, R. S. Dying. Scientific American, 1973, 229, 5561. National Center for Health Statistics. Vital statistics of the United States: 1962, Vol. II - Mortality, Part A. Public Health Service. USGPO, Washington, 1964. National Center for Health Statistics. Characteristics of
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residents in institutions for the aged and chronically ill, United States, April-June, 1963. Vital and Health Statistics. PHS Pub. No. 1000-Series 12, No. 2. USCPO, Washington, Sept., 1965. (a) National Center for Health Statistics. Institutions for the aged and chronically ill, United States, April-June, 1963. Vital and Health Statistics. PHS Pub. No. 1000Series 12, No. 1. USCPO, Washington, July, 1965. (b) National Center for Health Statistics. Design and methodology for a national survey of nursing homes. Vital and Health Statistics. PHS Pub. No. 1000-Series 1, No. 7. USCPO, Washington, Sept., 1968. National Center for Health Statistics. Vital statistics of the United States: 1968, Vol. II - Mortality, Part A. Pub. No. (HSM) 72-1102. Health Services and Mental Health Administration. USCPO, Washington, 1971. National Center for Health Statistics. Characteristics of residents in nursing and personal care homes, United States, June-August, 1969. Vital and Health Statistics. Series 12, No. 19, DHEW Pub. No. (HSM) 73-1704. Health Services and Mental Health Administration. USCPO, Washington, Feb., 1973. National Center for Health Statistics. Selected characteristics of nursing homes for the aged and chronically ill, United States, June-August, 1969. Vital and Health Statistics. Series 12, No. 23. DHEW Pub. No. (HRA) 741708. Health Resources Administration. USCPO, Washington, Jan., 1974. National Center for Health Statistics. Selected operating and financial characteristics of nursing homes, United States, 1973-1974 National Nursing Home Survey. Vital and Health Statistics. Series 13, No. 22. DHEW Pub. No. (HRA) 76-1773. Health Resources Administration. USCPO, Washington, Dec, 1975. National Center for Health Statistics. Vital statistics of the United States: 1972, Vol. II - Mortality, Part A. Pub. No. (HRA) 76-1101. Health Resources Administration. USCPO, Washington, 1976. National Center for Health Statistics. Characteristics, activities, and social contacts of nursing home residents, United States, 1973-1974 National Nursing Home Survey. Vital and Health Statistics. Series 13, No. 27. Health Resources Administration. USCPO, Washington, (in press) Saunders, C. The moment of truth. In L. Pearson (Ed.), Death and dying: Current issues in the treatment of the dying person. Cleveland: Case Western Reserve Univ. Press, 1969. Schultz, R., & Aderman, D. How the medical staff copes with dying patients: A critical review. Omega, 1976, 7, 11-21. Thorson, J. Unpublished data from a survey conducted among nursing home personnel in the State of Georgia, 1976. U. S. Bureau of the Census. Estimates of the population of the United States, by age, sex, and race: April 1, 1960 to July 1, 1973. Current Population Reports. Series P25, No. 519. USCPO, Washington, 1974. Wershow, H. J. The four percent fallacy: Some further evidence and policy implications. Cerontologist, 1976, 76, 52-55.
The Gerontologist
National Statistics on Deaths in Nursing Homes Interpretations and Implications Donald K. Ingram, BA, and John R. Barry, PhD1 It is often conceded that the place, the locus, of dying in America is changing to increasingly involve an institutional setting, including hospitals and long-term facilities. As more and more nursing homes have opened up and/or expanded their facilities, they have accommodated larger and larger numbers of aged persons. Consequently it was to be expected that more and more deaths would be occurring in these institutions. However, national data to document this expectation have not been presented nor examined in any detail recently. Such documentation is important for assessing the implications of this phenomenon. Today increasing numbers of researchers and leaders in the field of longterm care are pointing to the major need for a more extensive awareness of, and a better orientation toward, dying and death on the part of nursing home staffs. Being in a relatively new and expanding job field, many of these staffs are not extensively oriented nor trained about the particular management problems related to the dying and death of their patients. Our analysis of national statistics on mortality among nursing home residents provides empirical evidence to underscore the need for such training. The 4% Fallacy National death statistics also provide a meaningful measure of the utilization of nursing homes. Kastenbaum and Candy (1973) were the first to caution about the implications of the " 4 % fallacy." According to them, a misleading perpective regarding the 'Dept. of Psychology, Univ. of Ceorgia, Athens 30602.
Vol.17, No. 4,1977
impact of institutionalization on the aged can occur when there is total reliance upon utilization rates based on data from crosssectional surveys. Such surveys estimate only the number of persons in nursing homes at any one time. The estimate that 4% of the aged population are nursing home residents is not fallacious; it is accurate. However, this rate does not reflect adequately the probability of an individual spending some portion of his life and perhaps dying in this type of institution. A series of longitudinal studies, which would survey a cohort of persons at different points in their lives, would provide the most accurate estimate of this risk. This approach, though, would prove to be exceedingly time-consuming and expensive. In lieu of longitudinal data on utilization, Kastenbaum and Candy (1973) examined the obituaries of aged persons in Metropolitan Detroit to analyze where deaths occur. They found that about 20% of the reported deaths were residents of nursing homes. The data .presented in the present paper corroborate this finding on a national level. The probability of dying while a nursing home resident is much higher than a population utilization rate of 4% would indicate. Availability of National Data on Nursing Homes Deaths The most reliable data for showing trends in nursing home characteristics on a national scale are provided by the National Center for Health Statistics (NCHS). This Federal agency conducts periodic, wide-scope national surveys of long-term care facilities (NCHS, 1968). Most of the statistics to be reported herein are based on data collected in the
303
following three surveys: (1) the Resident Places Survey-1 (RPS-1), conducted from April to June, 1963 (NCHS, 1965a, b); (2) the Resident Places Survey-3 (RPS-3), conducted from June to August, 1969 (NCHS, 1973, 1974); and, (3) the 1973-1974 National Nursing Home Survey (1973-1974 NNHS), conducted from August, 1973 to April, 1974 (NCHS, 1975). Using a combination of mailout and personal interviewing techniques, comprehensive information on the facilities, their residents, and their staffs was collected in these surveys. The only data pertaining to deaths were obtained from one item on the survey questionnaires. This item was a routine inquiry about the number of residents who had died during the calendar year preceding that particular survey. Thus, data on deaths occurring to nursing home residents are available for the following 3 years: 1962, 1968, and 1972. No other information was sought on the characteristics of the dead persons.2 A count was made using the records of the institution; thus, the estimates of the incidence of death are considered to be highly reliable. 3 Throughout this paper, our analyses are limited by the definitions and techniques of data collection that the NCHS employed. MORTALITY AND NURSING HOMES
Trends in Nursing Home Characteristics The compilation of data from the NCHS surveys, shown in Table 1, reveals the growth 'The NCHS count of deaths identified people who died while on the rolls of nursing homes, although some residents may have been in hospitals at the time of their deaths. In all instances, they had not been discharged formally from the nursing homes if they were counted by the NCHS as nursing home deaths. J AII estimates presented from the NCHS surveys had relative standard errors of no more than 6%, most being on the order of 2-3%.
trend in nursing homes.4 It is evident that nursing homes underwent a rapid growth period between 1963 and 1969. It is also apparent that while this growth continued through to 1973-1974, the rate of growth slackened considerably. Although the actual number of nursing homes in operation during 1973-1974 showed only a slight increase over the number reported during 1969, there were still substantial increases in the numbers of residents, beds, admissions, and discharges since 1969. That nursing homes have continued to increase in size is suggested by the data on the number of beds in each home. The average number of beds in 1963 was 39.9; in 1969, it was 55.7; and in 1973-1974 this figure increased to 74.8 beds per facility. In the span of 10 years, nursing homes have nearly doubled their average number of beds as they have expanded to accommodate more than a million persons who resided in these institutions. At the time of the 1973-1974 NNHS, 89% of the residents were aged 65+ (NCHS, in press). Thus the utilization rate computed from data in Table 1 is 4.6% of the aged U. S. population. The estimates of over a million admissions and discharges from nursing homes during the calendar year preceding the 1973-1974 NNHS, however, suggests that many more persons actually experienced a period of residency that the 4.6% rate indicates. In short, there is a tremendous turnover of residents. There are many persons 4 lt should be noted that nursing home is the NCHS classification used to describe a particular type of long-term care facility. According to NCHS definitions, this category refers to long-term care facilities providing a certain level of nursing care; and, as such, it excludes facilities which primarily provide personal or custodial care. Although the RPS-1 and RPS-3 collected information on personal care homes, the data in Table 1 have been adjusted to exclude any reference to these types of facilities. The 1973-1974 NNHS did not attempt to survey personal care homes.
Table 1. Trends in Selected Characteristics of Nursing Homes. Data Period Selected Characteristics (Number) Nursing homes Residents Beds Admissions" Discharges" Resident days of care" Beds per nursing home Residents aged 65 + /per 100 U.S. population aged 65 + * Deaths"
1963
1969
% Change
1973-1974
Between 1963 & 1969
Between 1963 & 1973-74
Between 1969 & 1973-74
12,800 457,050 510,180 358,480 339,260 — 39.9
15,340 778,290 854,910 946,020 872,250 256,332,490 55.7
15,700 1,075,800 1,174,800 1,110,800 1,077,500 368,906,000 74.8
19.8 70.3 67.6 163.9 157.1 — 39.6
22.7 135.4 130.3 209.9 217.6 — 87.5
2.3 38.2 37.4 17.4 23.5 43.9 34.3
2.3 139,390
3.6 296,270
4.6 327,400
56.5 112.5
100.0 134.9
27.8 10.5
"Estimate was based on data collected during the calendar year preceding the survey. *Base of rates were derived from estimates of the U. S. Bureau of the Census (1974).
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entering and leaving this population during the course of a year. The number of resident days of care probably provides a better picture of the actual utilization of nursing homes. This estimate represents the sum of daily patient censuses during the calendar year preceding the survey. What proportion of the aged population spends some time in a nursing home during any one year? In lieu of data from longitudinal surveys, it may suffice to ask how much greater is this proportion than that suggested by the population rate of 4.6%. As proposed by Kastenbaum and Candy (1973), death statistics can assist in answering this question. Trends in the Incidence of Nursing Home Deaths
A recently completed analysis of data from the 1973-1974 NNHS has provided an estimate of the number of nursing home residents who died during the year preceding that survey (NCHS, in press). During 1972 the number of nursing home deaths was estimated to be 327,400. This number is evidence of a continuing, upward trend of this phenomenon. As can be seen in Table 1, the number of deaths of nursing home residents more than doubled from 1962 to 1968. Although this dramatic increase slowed to a 10.5% rise between 1968 and 1972, the trend was still clearly an upward one. In Table 2 the total numbers of deaths have been converted to several different rates in order to assess the incidence patterns and impact of nursing home mortality. By computing nursing home deaths as a proportion of the total U.S. deaths for the 3 data years, it can be seen that these institutions are conTable 2. Trends in the Incidence of Nursing Home Death. Number of Deaths per
Data period 1962 1968 1972
100 U.S. deaths" 7.9 15.4 16.7 10.5 19.8 21.1 100 U.S. deaths, aged 55 + ° Nursing home* 10.9 19.3 20.9 10 beds" 2.7 2.8 3.5 1,000 U.S. population, aged 55 + c 4.1 8.2 7.9 100 residents* 30.5 38.1 30.4 41.1 34.0 30.4 100 discharges* 42.2 32.4 100 resident years of care — "Base of rates were derived from data found in the following publications: (NCHS, 1964; NCHS, 1971; NCHS, 1976). *Base of rates are estimates obtained at time of survey during succeeding year/s. 'Base of rate was derived from estimate of the U.S. Bureau of the Census (1974).
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fronting an increasing load olf the total burden of mortality in the country. The rate doubled between 1962 and 1972. The proportionate mortality figures are even higher if it is assumed that all nursing home deaths occurred to residents aged 55+. 5 Thus, by computing nursing home deaths as a proportion of the total U.S. deaths occurring to persons aged 55 + , the estimate of 21.1% obtained for 1972 is quite comparable to the figures which Kastenbaum and Candy (1973) calculated for Metropolitan Detroit during 1971. Corroborating theirs, our estimate also suggests that about 1 out of 5 persons who died in the U. S. during 1972 aged 55+ died while a resident of a nursing home. As argued by Kastenbaum and Candy (1973), this rate is evidence of a much higher utilization rate of nursing homes than the cross-sectional population estimate of 4.6% implies. The mortality load confronting the individual facility can be estimated by dividing the number of deaths during a calendar year by the number of nursing homes in operation at the time of each survey. For example, during 1972 nursing homes averaged about 21 deaths per facility annually, or nearly 2 deaths every month. As shown in Table 2, this rate increased markedly between 1962 and 1972 with the greatest increase occurring between 1962 and 1968, This average, however, does not take into account the size of the facility. Another statistic reflecting the relative impact of mortality on the individual facility was computed by dividing the number of deaths during a calendar year by the number of beds maintained at the time of each survey. This rate accounts for the size of the facility. During 1972 there were 2.8 deaths for every 10 beds maintained in nursing homes. Table 2 indicates that this parameter increased between 1962 and 1968 and then decreased between 1968 and 1972. This decrease does not conflict with the increase in the death rate per nursing home, since it can be noted in Table 1 that the number of facilities increased relatively little (2.3%) between 1969 and 1973-1974, while the number of beds increased substantially (37.4%). The last four rates presented in Table 2 describe the risk of nursing home mortality in relation to the individual, as a member of the 'This is a fairly safe assumption, since the RPS-3 and the 1973-1974 NNHS estimated that only 5% of all residents were under 55 years of age.
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general U.S. population and as a member of the nursing home population. The rate of nursing home deaths during 1972 was 8.2 deaths per 1,000 persons aged 55+ in the country at that time. This statistic, too, was double what it had been in 1962; but it has changed relatively little since 1968. The death rate of residents within the nursing home population was computed in several different ways. One way was to divide the number of deaths during a calendar year by the number of residents estimated at the time of each survey during the succeeding year. As depicted in Table 2, this death rate per 100 nursing home residents increased between 1962 and 1968 and then decreased between 1968 and 1972. As a measure of actual risk to the nursing home resident, though, this rate may be unreliable for two reasons. First, its numerator and denominator are estimates from two different years. Second, the high degree of resident turnover in nursing homes complicates the problem of determining the true population at risk. The death rate in nursing homes can also be computed as a proportion of all discharges (alive and dead). The trend in this rate observed in Table 2 would suggest that mortality in nursing homes has declined since 1962. However, this rate can be misleading because it, too, relies upon estimates from two different years and it does not account for changes in turnover which are reflected in the estimates of admissions and discharges. As shown in Table 1, the number of total discharges between 1963 and 1973-1974 increased 218%, while the number of deaths (dischargees who were dead) increased by 135%. This disparity can account for the decrease in the death/discharge rate. Discharges due to death probably are independent of the reasons for the great increase in live discharges from nursing homes. In order to avoid the aforementioned problems of interpretation, an incidence rate estimating the number of deaths per 100 resident years of care was computed in an attempt to assess the true risk of mortality in the nursing home population during 1968 and 1972. The base of this rate was the total number of resident days of care during the calendar year preceding the survey, divided by 365 to convert to resident years of care as the unit of exposure. In effect, this conversion provides an artificial estimate of the population in which no turnover occurs. This rate is more valid 306
than deaths per 100 residents because these data were obtained for the same two time periods, and they account for the actual time at risk, or the exposure, of the affected population. Information on resident days of care was not available for 1962, however. As presented in Table 2, the rate for 1972 was 32.4 deaths per 100 resident years of care. This was a clear decrease from the rate of 42.2 deaths per 100 resident years of care estimated for 1968. These death rates for the nursing home population can be compared with the general death rates of the U.S. population aged 55 + during the same 2 years. Although the denominators for these mortality rates are estimated differently, such a comparison is valid. This is because the statistical rationale used to compute general population rates is to take the midyear estimate of the population size as the denominator and the number of deaths occurring during the entire year as the numerator. Using the midyear population size is, in essence, an attempt to account for turnover in the population during the year. In effect then, it, too, is an estimate of personyears, comparable to the estimate of resident years for the nursing home population. During 1968 the mortality rate for persons aged 55+ in the country was 4.0 deaths per 100 in this age group, and it was 3.9 deaths per 100 persons aged 55+ during 1972 (NCHS, 1971; NCHS, 1976). In comparison, the death rate per 100 resident years of care in the nursing home population was eight to ten times higher than for the general population during the same years. From these data, then, it is clear that the mortality risk confronting nursing home residents is very much higher than that confronting older persons in general. Implications for Nursing Home Planning and Policy
Over the last decade an intensive national effort, sponsored by Federal and state governments, as well as by the industry, has been made to upgrade the status of nursing homes in the nation's health care system. A primary objective was to change their image as way stations for the old and indigent en route to the grave. As implemented by Medicare and Medicaid legislation, the concept of the extended care facility exemplified a new emphasis on convalescent care and on restorative therapy and rehabilitation. The Gerontologist
The national statistics on nursing home mortality, which we have analyzed, appear to contradict the attempt to change the public image of these institutions as places where people go to die. Indeed, nursing homes are actually confronting an increasing proportion of the nation's total mortality. On the other hand, there is evidence that this trend had begun to slacken somewhat by 1972 following a dramatic increase between 1962 and 1968. Furthermore, the mortality rate, as a measure of the risk of death within the nursing home population, actually declined between 1968 and 1972. Since there are no other national data available on the characteristics of the persons dying in nursing homes, it is difficult to speculate on the causes of these trends. Additional research, involving longitudinal study, could prove to be very valuable in this regard. It would be of particular interest to determine the factors involved in the variation of death rates across nursing homes and the factors associated with actual mortality risk. Our objective in presenting the national statistics available on nursing home mortality, however, was not to discuss their etiology. Instead our primary desire is to stress the implications of the statistics which describe the increasing numbers of deaths. An essential question to be considered is whether nursing homes are planning and preparing to meet this increase. In his review of the Western approach to death and dying, Morison (1973) contended, A high proportion of the patients in nursing homes are destined to die there or be removed only at the last minute for intensive care, yet few of these institutions appear to have given much thought to the special problems of the dying. We strongly feel that some orientation about death and the problems of dying people must become a part of the formal orientation and background of all nursing home personnel. Although we will not present a detailed outline of the kinds of information of which such staffs should become aware, we can suggest the broad areas which deserve attention. First and foremost, such staff should receive some person-to-person exposure to people who are dying. While we can read about death and, thus, experience it Vol. 17, No. 4,1977
vicariously, there is no substitute for interacting with a dying person. Staff should be encouraged to persist in this experience until they begin to feel at ease and able to focus on the dying person more than on their own feelings. Typical problems which the dying person faces can be discussed in groups and occasionally even with dying patients themselves. Possible ways to interact with the dying patient about his problems can be roleplayed and finally tried out with a dying person as well as discussed with an experienced supervisor. Finally, in order to feel comfortable in facing such problems, one must be helped to face and resolve his own fears of death. The staff must learn to interact not only with the dying resident but also with his family and friends. Guidelines for dealing with requests for information can be developed. All staff should be made aware of the guidelines, how to implement them, and when exceptions can be made. The need for providing nursing home staff with this type of training has been underscored repeatedly by the research available on staff attitudes toward death and dying. In their critical review of the research in this area, Schultz and Aderman (1976) concluded that there was ample evidence that physicians and nurses alike often avoid, and even neglect, the dying patient. In her study of the attitudes of nursing home aides, Howard (1974) found that work experience in a nursing home appeared to encourage avoidance of death. In an unpublished survey recently conducted among nursing home personnel in the State of Georgia, Thorson (1976) noted that only about a third of those polled indicated any interest at all in a brief orientation program "dealing with the dying patient and his family." Of the 28 topics listed, only two were of less interest to those who were surveyed than death and dying. These findings might be juxtaposed with those studies which have found that most dying patients eventually want to discuss their impending deaths in an open, honest manner (Kubler-Ross, 1969; Saunders, 1969). In the face of this wish, the general reaction of most helpers has been to avoid the subject of death and its eventuality. Indeed, it is apparent that many helpers are in fact exposed to dying persons; but rather than utilizing this exposure as a positive learning experience,
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they more often view it as a negative experience and one to be avoided in the future. We are not recommending that staff become preoccupied with death. Rather we believe that they must learn not to avoid its consideration and to face the event openly. Death must come to be viewed as a natural phenomenon, one that we will all experience. In this way, it may be possible to restore some of the dignity that the final stage of life has lost in the institutional setting. Many of the taboos surrounding the subject of death are slowly being removed as evidenced by the appearance of increasing numbers of articles, lectures, and courses. In our opinion, it is unlikely that this new attitude has genuinely affected working routine in nursing homes. As Wershow (1976) has emphasized, there are instances of heavily subsidized research programs in large, nonprofit geriatric centers which may have had the effect of updating training programs in regard to this subject. He suggested, though, that such pilot programs, cannot be considered representative of the "real world" of the proprietary nursing homes, which usually have different patient populations, different levels of professionalism on the staff, and financial constraints not affecting the model geriatric center. It is evident that death in an institution is becoming an American way of life. According to trends in the national statistics, nursing homes in general must be prepared to handle an increasing mortality load and the responsibilities attendant to this phenomenon. References
Howard, E. The effect of work experience in a nursing home on attitudes toward death held by nurse aides. Cerontologist, 1974, 14, 54-56. Kastenbaum, R. S., & Candy, S. The 4% fallacy: A methodological and empirical critique of extended care facility program statistics. International journal of Aging & Human Development, W73,4, 15-21. Kubler-Ross, E. On death and dying. New York: Macmillian, 1969. Morison, R. S. Dying. Scientific American, 1973, 229, 5561. National Center for Health Statistics. Vital statistics of the United States: 1962, Vol. II - Mortality, Part A. Public Health Service. USGPO, Washington, 1964. National Center for Health Statistics. Characteristics of
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residents in institutions for the aged and chronically ill, United States, April-June, 1963. Vital and Health Statistics. PHS Pub. No. 1000-Series 12, No. 2. USCPO, Washington, Sept., 1965. (a) National Center for Health Statistics. Institutions for the aged and chronically ill, United States, April-June, 1963. Vital and Health Statistics. PHS Pub. No. 1000Series 12, No. 1. USCPO, Washington, July, 1965. (b) National Center for Health Statistics. Design and methodology for a national survey of nursing homes. Vital and Health Statistics. PHS Pub. No. 1000-Series 1, No. 7. USCPO, Washington, Sept., 1968. National Center for Health Statistics. Vital statistics of the United States: 1968, Vol. II - Mortality, Part A. Pub. No. (HSM) 72-1102. Health Services and Mental Health Administration. USCPO, Washington, 1971. National Center for Health Statistics. Characteristics of residents in nursing and personal care homes, United States, June-August, 1969. Vital and Health Statistics. Series 12, No. 19, DHEW Pub. No. (HSM) 73-1704. Health Services and Mental Health Administration. USCPO, Washington, Feb., 1973. National Center for Health Statistics. Selected characteristics of nursing homes for the aged and chronically ill, United States, June-August, 1969. Vital and Health Statistics. Series 12, No. 23. DHEW Pub. No. (HRA) 741708. Health Resources Administration. USCPO, Washington, Jan., 1974. National Center for Health Statistics. Selected operating and financial characteristics of nursing homes, United States, 1973-1974 National Nursing Home Survey. Vital and Health Statistics. Series 13, No. 22. DHEW Pub. No. (HRA) 76-1773. Health Resources Administration. USCPO, Washington, Dec, 1975. National Center for Health Statistics. Vital statistics of the United States: 1972, Vol. II - Mortality, Part A. Pub. No. (HRA) 76-1101. Health Resources Administration. USCPO, Washington, 1976. National Center for Health Statistics. Characteristics, activities, and social contacts of nursing home residents, United States, 1973-1974 National Nursing Home Survey. Vital and Health Statistics. Series 13, No. 27. Health Resources Administration. USCPO, Washington, (in press) Saunders, C. The moment of truth. In L. Pearson (Ed.), Death and dying: Current issues in the treatment of the dying person. Cleveland: Case Western Reserve Univ. Press, 1969. Schultz, R., & Aderman, D. How the medical staff copes with dying patients: A critical review. Omega, 1976, 7, 11-21. Thorson, J. Unpublished data from a survey conducted among nursing home personnel in the State of Georgia, 1976. U. S. Bureau of the Census. Estimates of the population of the United States, by age, sex, and race: April 1, 1960 to July 1, 1973. Current Population Reports. Series P25, No. 519. USCPO, Washington, 1974. Wershow, H. J. The four percent fallacy: Some further evidence and policy implications. Cerontologist, 1976, 76, 52-55.
The Gerontologist
