Special Article
Lifetime Use of Nursing Home Care
N Engl J Med 1991; 324:595-600February 28, 1991
- Abstract
- Abstract
Background and Methods.
Despite the growth in the number of Americans in nursing homes, there are only limited data on the total amount of time that people spend in such facilities. We estimate the amount of time the average person spends in nursing homes over his or her lifetime (lifetime nursing home use), using data from the National Mortality Followback Survey of the next of kin of a sample of persons 25 years of age or older who died in 1986. On the basis of these data, we estimated the likelihood that Americans will use nursing home care during the course of their lifetimes and the total duration of such care. Current data on life expectancy were then used to reweight the sample to project lifetime nursing home use for those who became 65 years old in 1990.
Results.
Of those who died in 1986 at 25 years of age or older, 29 percent had at some time been residents in a nursing home, and almost half of those who entered a nursing home spent a cumulative total of at least one year there. The probability of nursing home use increased sharply with age at death: 17 percent for age 65 to 74, 36 percent for age 75 to 84, and 60 percent for age 85 to 94. For persons who turned 65 in 1990, we project that 43 percent will enter a nursing home at some time before they die. Of those who enter nursing homes, 55 percent will have total lifetime use of at least one year, and 21 percent will have total lifetime use of five years or more. We also project that more women than men will enter nursing homes (52 percent vs. 33 percent), and among them, more women than men will have total lifetime nursing home use of five years or more (25 percent vs. 13 percent).
Conclusions.
Our projections indicate that over a lifetime, the risk of entering a nursing home and spending a long time there is substantial. With the elderly population growing, this has important implications for both medical practice and the financing of long-term care. (N Engl J Med 1991;324:595–600.)
Media in This Article
Table 1
Percentage of Persons Who Died in 1986 Who Spent Some Time in a Nursing Home.*Table 2
Distribution of Lifetime Use among Persons Who Died in 1986 Who Spent Time in Nursing Homes.*Article Activity
- Article
In recent decades the nursing home population in the United States has increased substantially. A little over a half million people were residing in nursing homes or personal care facilities in 1964.1 By 1985, after considerable growth in the elderly population and the establishment of the Medicaid program, which covers nursing home care for those without financial resources, the number of nursing home residents had almost tripled.2 Total annual expenditures on nursing home care also rose dramatically during this period, from $4.2 billion3 to $34.7 billion4 after adjustment for inflation. Current projections are for continued growth in the nursing home population.5
Health care providers, patients and their families, and public officials are now facing the consequences of this growth. Physicians are often called on to assist permanently disabled patients and their families with decisions about long-term care. At the same time, at least partly because of the system of prospective payment for hospital care, doctors and hospital discharge planners must seek care for elderly patients who are being discharged more rapidly, and nursing home personnel must care for patients who are sicker than in the past.6 The elderly and their families worry about the potential cost of a lengthy nursing home stay. And public officials, responding in part to constituents' pressure for change and in part to the growing cost to the public of nursing home care, are searching for sensible policy reforms to spread the risk of catastrophic costs due to long stays in nursing homes.
Despite widespread concern about the expansion of nursing home care over the past several decades, information about how much care individual persons use over a lifetime has been limited. In this paper we present estimates of the total amount of time spent in nursing homes during a lifetime.
Methods
The data for this analysis were obtained from the 1986 National Mortality Followback Survey, a survey of the next of kin of a nationally representative sample of adults who died in 1986.7 Death certificates of U.S. residents 25 years of age or older were drawn from the 1986 Current Mortality Sample; those from Oregon were excluded because of state requirements for the consent of survey respondents. In the survey, the next of kin or someone else familiar with each deceased person in the sample was asked about, among other things, the person's stays in nursing homes. Specifically, the respondent was asked whether the deceased person was ever admitted to a nursing home, how many nights were spent there in his or her last year of life, and the total amount of time spent in nursing homes over his or her entire lifetime (one day to less than three months, three months to less than one year, one year to less than five years, or five years or more). The answers to these questions, together with information on demographic characteristics and place of death obtained from questionnaires and death certificates, formed the basis of our analysis.
The overall rate of response to the questionnaire was 89 percent. The unweighted size of the sample of deceased subjects was 16,587. The estimates of the amount of time spent in nursing homes over a person's lifetime (lifetime nursing home use) by persons who died in 1986 have been weighted to adjust for nonresponse and the complex sample design. The resulting estimates are representative of all U.S. residents 25 years of age or older (excluding those in Oregon) who died in 1986.
All estimates presented for subjects who died in 1986 are expressed as proportions. In every instance the denominator for the proportion was at least 75 unweighted cases. Standard errors, included in parentheses in the tables, were estimated by a method developed by Shah for complex survey designs.8 All estimates presented in this paper have relative standard errors of less than 30 percent. In addition, differences between reported estimates were tested for statistical significance. Unless otherwise indicated, we have discussed only differences that were significant at the 0.05 level, by two-tailed test.
After calculating estimates for subjects who died in 1986, we projected future nursing home use by persons who had their 65th birthday in 1990. Lifetime nursing home use by that cohort will differ from that of elderly people who died in 1986 either if patterns of nursing home use change (for example, as a result of changes in disease prevalence) or if the proportion dying at each age differs between the two groups. Our projections incorporate adjustments for expected differences in length of survival between the two groups that result from substantial gains in life expectancy9 and the disproportionate number of deaths at younger ages among subjects who died in 1986 that was caused by the growth over the past 40 years in the size of the cohorts reaching the age of 65. To adjust for the effects of increased life expectancy and the differing composition of the cohorts, the sample was reweighted to reflect the Social Security Administration's projections of life expectancy for those who turned 65 in 1990. (Details of the methods are available from the National Auxiliary Publications Service.*)
Results
Lifetime Nursing Home Use among Persons Who Died in 1986
Residence in a nursing home at some point during a person's lifetime is far from rare. Almost 30 percent of those who died in 1986 were nursing home residents at some time during their lives (Table 1Table 1
Percentage of Persons Who Died in 1986 Who Spent Some Time in a Nursing Home.*). Nursing home use increased sharply with age at death. Less than 5 percent of those who died before the age of 45 ever resided in a nursing home, as compared with 71 percent of those who died at 95 years of age or older. Women were far more likely to enter nursing homes than men; some use was reported for 38 percent of women, as compared with 21 percent of men. Our estimate that 37 percent of those who died at 65 years of age or older spent some time in a nursing home is within the range reported in earlier studies (19 to 46 percent)10 11 12 13 14 15 16 17 and is within one percentage point of the only estimate made with use of a similar method.18 Roughly half the persons who entered nursing homes spent at least a year of their lives there (Table 2Table 2
Distribution of Lifetime Use among Persons Who Died in 1986 Who Spent Time in Nursing Homes.*). Just over one sixth had cumulative lifetime use of five years or more. For a minority, lifetime use was relatively brief; 30 percent used less than three months of nursing home care. Among elderly persons who died in 1986 who had ever spent time in a nursing home, the percentage with five or more years of lifetime use increased with age. (All comparisons were statistically significant except for that between the persons who were 65 to 74 years old at the time of death and those who were 75 to 84 years old.) Those who survived to very old age were particularly likely to have spent large amounts of time in nursing homes. For example, among persons who entered nursing homes, 42 percent of those who survived to the age of 95 resided in a nursing home for a total of five or more years, as compared with 9 percent of those who died at 65 to 74 years of age.Lifetime nursing home use differs among socio-demographic groups. Table 3Table 3
Age- and Sex-Adjusted Estimates of Lifetime Nursing Home Use among Persons Who Died in 1986 at 65 Years of Age or Older, According to Sex, Race, Education, and Marital Status.* shows the percentage of persons who died in 1986 at 65 years of age or older who ever resided in nursing homes and the distribution of use among those subjects according to selected characteristics. The estimates have been standardized to adjust for differences among subgroups in longevity and sex. In a manner consistent with the unadjusted differences in Table 1, a much higher proportion of elderly women than men spent time in nursing homes (42 percent vs. 32 percent), even after we eliminated the effect of women's greater longevity. Moreover, women used more nursing home care than men. Among elderly persons who died in 1986 who had entered a nursing home, 19 percent of the women and 12 percent of the men received care for a total of five or more years.A much higher percentage of whites than blacks used nursing homes (38 percent vs. 27 percent), after adjustment for differences between whites and blacks in longevity and sex. Among those who entered nursing homes, the amount of time spent there was slightly greater for whites than for blacks - 17 percent of whites who entered nursing homes spent a total of at least five years there, as compared with 14 percent of blacks, although this difference was not statistically significant.
Nursing home use varied little among educational groups. The percentage that ever used a nursing home did not differ significantly among the groups, and the percentage of users with five or more years of use differed significantly only between high-school graduates and those with less than an eighth-grade education.
Marital status was strongly associated with lifetime nursing home use, even after adjustment for differences in longevity and sex among marital-status groups. A little over one quarter of those who were married at the time of their deaths had used nursing homes, as compared with over two fifths of those who were widowed, divorced, or separated or who had never married. The association between the amount of time spent in nursing homes and marital status is even more striking. Among those who ever entered a nursing home, 7 percent of those who were married when they died spent five or more years in nursing homes, as compared with 16 percent of those who were widowed, 17 percent of those who were separated or divorced, and 29 percent of those who had never married.
Finally, the National Mortality Followback Survey also contains data on the timing of nursing home use during a person's life. The fraction of elderly nursing home residents who spent at least some time in a nursing home during the last year of life was a remarkably high 93 percent. Of those who used nursing homes in the last year of life, 55 percent died there, 42 percent died in or on the way to a hospital, and the remainder died at home or elsewhere (data not shown).
Projected Nursing Home Use among Persons Who Turned 65 in 1990
Projections of the number of persons who reached the age of 65 in 1990 who will exceed various amounts of nursing home use during their lifetimes are presented in Table 4Table 4
Projected Nursing Home Use for Persons Who Reached 65 Years of Age in 1990.*. Of the approximately 2.2 million persons who turned 65 in 1990,19 more than 900,000 (43 percent) are expected to enter a nursing home at least once before they die. The greater number of women who reach the age of 65, combined with their higher likelihood of requiring nursing home care, means that according to our projections, almost two of every three persons who use nursing homes will be women.We project that almost one third of all persons who reached 65 years of age in 1990 will spend at least three months in a nursing home during their lifetimes; 24 percent, at least a year; and 9 percent, at least five years. Women are more likely to spend large amounts of time in a nursing home than men; 13 percent of women are projected to have lifetime nursing home use of five or more years, as compared with only 4 percent of men. Those who incur extremely high nursing home costs will be predominantly women. Almost 8 of 10 persons using at least five years of nursing home care will be women.
Discussion
The high likelihood of nursing home use projected for the elderly population has implications for medical practice over the next several decades. As the population continues to age, many physicians will receive more frequent requests for assistance with decisions about long-term care. The extent of the increase will depend not only on the clinical characteristics of their patients but also, as the demographic findings suggest, on their nonmedical characteristics (e.g., marital status, sex, and race or ethnic background). The need for physicians to be informed about the range of long-term care services available in their communities, including home care, has been noted previously.20 Our projections suggest that this need will be even greater in the future.
Our projections also indicate that the likelihood of spending a large amount of time in a nursing home is substantial — a prospect that poses another challenge for medical practice. Physicians and other health care providers will need to be concerned not only with the needs of many patients recently transferred from hospitals for short-term rehabilitative services and skilled nursing care, but also with the routine health care needs of those who spend a substantial portion of their lives in nursing homes. In 1980, Vladeck reported that the ongoing care of chronically ill nursing home residents was deficient and that physicians were largely absent from nursing homes.21 There is little evidence of substantial improvement in the quality of nursing home care since that time.22 With more than 500,000 of the 2.2 million persons who turned 65 in 1990 projected to spend at least a year in a nursing home —and 195,000 projected to spend five or more years —the medical management of the chronic diseases of residents of nursing homes remains a major concern.
Inevitably, the projections of future nursing home use presented in this paper are subject to uncertainty. The reweighting procedure used in making the projections adjusted for changes in life expectancy and the composition of the cohorts, but not for possible future changes in the pattern of nursing home use. Many factors could affect future use. For example, because of the longer survival of spouses, the percentage of the very old who are married could increase in the future, reducing their reliance on nursing home care. The Social Security Administration's projections indicate, however, that the change in the percentage of persons 85 years of age or older who are married will be small — an increase from 54 to 57 percent for men and from 13 to 14 percent for women between 1990 and 2020.23 Such a change is unlikely to have an important effect on future nursing home use.
Changes in the need for long-term care due to changes in medical knowledge and practice, lifestyle, or other factors also could affect future use. "Active life expectancy" is a measure of the amount of time persons are expected to be able to continue to function independently.24 If the proportion of life spent without disability increases or decreases in the future, the projections of nursing home use presented here may be over- or underestimates. The extent to which changes in active life expectancy affect nursing home use depends in part on whether it is the proportion of life spent with serious as opposed to mild disability that changes.25 Unfortunately, despite a growing number of studies, there remains considerable uncertainty about trends in active life expectancy.26 27 28 29
Other reasons why nursing home use may change in the future include the introduction of new financing methods for acute or long-term care. Prospective payment of hospitals, for example, appears to have increased the proportion of Medicare patients discharged from hospitals to nursing homes.30 , 31 Limitations on the supply of nursing home beds, changes in the participation of women in the labor force, increases in coverage of long-term care by private insurers, and increases in the wealth and income of the elderly are yet other factors that could alter the use of nursing homes in the future. Because some of these changes would increase the use of nursing homes in the future whereas others would decrease it, their net effect is difficult to judge.
Possible errors in the survey responses that underlie our projections are another cause of uncertainty. The fact that information on the persons who died in 1986 was obtained from relatives is one potential source of error. Although the widely held belief among survey researchers is that proxy respondents generally under-report health events, carefully designed studies have found no evidence of a difference between reports by proxies and those by patients themselves.32 , 33 A second potential cause of concern is the length of the recall period. Generally, research suggests that asking respondents to recall events after a long period leads to underreporting,34 , 35 but few studies have recall periods of more than a year. A study with a longer recall period (2 1/2 years) found that although there was underreporting overall, the most important determinant of error was salience (i.e., the importance of the event), not the length of the recall period.36 Institutionalization is a salient event for most families, and over 80 percent of the respondents in the National Mortality Followback Survey were immediate family members (spouses, children, or siblings), who should have been knowledgeable about the subjects' nursing home use. Thus, if there is error due to the use of proxy respondents or to the length of the recall period, it appears more likely to lead to underreporting, which would have caused us to underestimate lifetime nursing home use.
Although the projections are inevitably subject to some uncertainty, any errors are unlikely to be great enough to alter the conclusion that our findings on the distribution of lifetime use contrast sharply with information previously available. In the past, researchers have analyzed information on nursing home stays rather than cumulative use.17 , 37 38 39 Lifetime use, however, is a very different concept from the length of a single nursing home stay. The former describes the total amount of time spent in nursing homes, including all of a person's separate stays, whereas the latter describes the duration of a single stay from admission to discharge. Since residents can have several stays, the average lifetime nursing home use is necessarily greater than the average length of single stays. In practice, this conceptual difference is exacerbated, because many nursing homes formally discharge residents when they go to a hospital and then readmit them when they return to the nursing home, thus artificially shortening the lengths of stay. Meiners and Trapnell40 and Spence and Wiener41 have tried to adjust for this effect by estimating the length of episodes of care, ignoring interruptions caused by hospitalization or transfers between nursing homes.
Table 5Table 5
Distributions of Use among Persons 65 Years of Age or Older Who Enter Nursing Homes.* compares the distribution of lengths of stay for a sample of discharged patients included in the 1985 National Nursing Home Survey, the duration of episodes as estimated by Meiners and Trapnell40 and by Spence and Wiener,41 and our projections of lifetime use on the basis of data from the National Mortality Followback Survey. Only 26 percent of those who turned 65 in 1990 who enter nursing homes are projected to use less than three months of care over their lifetimes. In contrast, over half of nursing home stays and roughly 45 percent of nursing home episodes last less than three months. At the other end of the distribution, we project that 21 percent of persons who enter nursing homes will have lifetime use of five or more years. In contrast, only 7 to 10 percent of episodes and only 6 percent of single stays last five or more years. Clearly, neither the nursing home stay nor the episode of care is a good substitute for lifetime nursing home use.The highly skewed distribution of lifetime nursing home use has implications for the financing of nursing home care. If past patterns continue, a majority of those who reached 65 years of age in 1990 will not use any nursing home care. Yet, 1 in 11 can expect to spend at least five years in a nursing home, at an average cost in today's prices of $25,000 per year. Expenses of $125,000 or more are enough to exhaust the financial resources of all but the wealthiest elderly persons. Nursing home care is only partially covered under existing government health insurance programs. Medicare covers some post-acute care in nursing homes, but not long stays. Medicaid covers care for those who cannot afford to pay, but it requires that most assets and virtually all income be exhausted in order to meet eligibility criteria.42 43 44 45 46 47 As a result, approximately half of all expenditures for nursing home care are private.4
Recognition of the unequal distribution of nursing home costs has led to the development of a private market for long-term care insurance that is small but growing rapidly.48 The information presented here, however, arouses concern about the adequacy of private insurance coverage. Typically, benefits are limited to three to five years of care. Yet, as we have seen, many persons are expected to require more than five years of care. In addition, policies often have limited protection against inflation. Because the time between the purchase of insurance and the payment of benefits can be many years, the value of the benefits can be substantially eroded. Fortunately, coverage of long stays and protection against inflation are improving, but many policies will cover only a small fraction of the catastrophic expenses incurred late in life.
A variety of proposals have been made to expand public financing of long-term care, as either an alternative or a complement to private insurance.49 50 51 52 53 The lifetime-use estimates presented here, however, suggest that congressional proposals currently under discussion will leave substantial gaps in the coverage of nursing home care. For example, a bipartisan congressional commission recently completed a year-long study of options for financing long-term care. In addition to liberalizing coverage for low- and moderateincome families, it proposed covering the first three months of nursing home care through a public entitlement, regardless of a person's income.54 Yet a third of those now turning 65 — almost three quarters of those who will use nursing homes — can expect to exceed that amount of care. An alternative proposal would cover the costs of care after the first two years,55 leaving uncovered the first $50,000 of nursing home costs — an amount that many could not afford to pay.
Changing financing mechanisms alone, however, is an inadequate response to the high projected likelihood of lengthy nursing home care. When one in seven men and one in three women who reached the age of 65 in 1990 are projected to spend at least one year in a nursing home, society needs to undertake a fundamental reassessment of long-term care, rather than simply paying for what has been done in the past. For example, innovations in the delivery of long-term care that reduce costs while maintaining or improving the quality of care should be strongly encouraged. In addition, research on extending the period of a person's life that is free of disability should be expanded. Extending active life expectancy has the potential both to improve the quality of life and to reduce the costs of long-term care.
The attention being directed toward long-term care by health professionals, the elderly and their families, and public officials is clearly warranted. The relatively high probability of use of large amounts of nursing home care that we report here, combined with the growth of the population surviving to the age of 65, will force society to make choices — either with forethought and debate or by default — about the delivery and financing of long-term care.
Presented in abstract form at the annual meeting of the Gerontological Society of America, Minneapolis, November 18 through 21, 1989.
The views expressed in this paper are those of the authors. No official endorsement by either the Agency for Health Care Policy and Research or the Department of Health and Human Services is intended or should be inferred.
We are indebted to Judy Sangl for pointing out the information on nursing home use in the National Mortality Followback Survey; to Stephen Cohen, Ayah Johnson, and Nancy Mathiowetz for methodologic advice; to Alice Wade of the Office of the Actuary of the Social Security Administration for generating the cohort life-table data used in the analysis; to Judy Feder, Marc Freiman, Donald Goldstone, Korbin Liu, Marilyn Moon, Thomas Rice, Timothy Smeeding, William Spector, Brenda Spillman, Robyn Stone, and anonymous reviewers for helpful comments on an earlier draft of this paper; to Karen Pinkston of Social and Scientific Systems, Bethesda, Md., for programming support; and to Mary Seidenberg for assistance in the preparation of the manuscript.
Source Information
From the Division of Long Term Care Studies, Center for Intramural Research, Agency for Health Care Policy Research, Rockville, Md. Address reprint requests to Publications and Information Branch, AHCPR, 18–12 Parklawn Bldg., Rockville, MD 20857.
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