Background Each year more than 220,000 Medicare beneficiariesreceive care from hospice programs designed to enhance the qualityof the end of life. Enrollment requires certification by a physicianthat the patient has a life expectancy of less than six months.We examined how long before death patients enrolled in hospiceprograms.
Methods Using 1990 Medicare claims data, we analyzed the characteristicsand survival of 6451 hospice patients followed for a minimumof 27 months with respect to mortality.
Results The patients' mean age was 76.4 years; 92.4 percentwere white. Half the patients were women, and 80.2 percent hadcancer of some type. The most common diagnoses were lung cancer(21.4 percent), colorectal cancer (10.5 percent), and prostatecancer (7.4 percent). The median survival after enrollment wasonly 36 days, and 15.6 percent of the patients died within 7days. At the other extreme, 14.9 percent of the patients livedlonger than six months. Survival varied substantially accordingto diagnosis, even after adjustment for age and coexisting conditions.The unadjusted survival after enrollment was shortest for thosewith renal failure, those with leukemia or lymphoma, and thosewith liver or biliary cancer; it was longest for those withchronic lung disease, those with dementia, and those with breastcancer. Patients at for-profit, larger, outpatient, or newerhospices lived longer after enrollment than those in other typesof hospice programs.
Conclusions Most patients who enter hospice care do so latein the course of their terminal illnesses. The timing of enrollmentin hospice programs varies substantially with the characteristicsof the patients and the hospices.
The primary goal of hospice care is the palliation of patients'physical and mental suffering. Hospice care may offer severaladvantages over traditional, hospital-based care for peoplewith terminal illnesses. It can be delivered in a patient'shome, allowing death to take place at home,1,2 and it may optimizethe relief of pain,3 increase patients' satisfaction,4,5,6 andincrease cost effectiveness.7,8,9,10,11,12 Partly in anticipationof such advantages, Medicare began covering hospice care forits beneficiaries in 1982.13,14 A Medicare beneficiary witha terminal illness who elects hospice care receives noncurativemedical and support services, many of which would not otherwisebe covered. These services include nursing care; physicians'services; medical appliances; drugs; short-term hospitalization;the services of homemakers and home health aides; physical,occupational, and speech therapy; psychological counseling;and social services. About 80 percent of patients have theseservices provided in their homes.15 In 1994, a total of 221,849beneficiaries received hospice care at a cost to Medicare of$1.32 billion, and the number of beneficiaries receiving hospicecare has been growing at an annual rate of 10 to 20 percent(Bureau of Policy Development, Health Care Financing Administration:unpublished data). Medicare beneficiaries make up approximately80 percent of all patients receiving hospice care in the UnitedStates.16
Under Medicare regulations, a beneficiary is eligible for coverageof hospice care only if the patient's doctor and the medicaldirector of the hospice certify that the patient is "terminallyill," defined as having a life expectancy of six months or less.17By electing to receive hospice care, the beneficiary waivesall rights to Medicare payment for curative treatment of hisor her terminal condition. The six-month standard may be difficult,however, for physicians to interpret or apply.18 Using a multistatesample, we determined the characteristics of Medicare patientswhose life expectancy had been predicted and who had enrolledin hospice programs. We also examined the duration of theirsurvival after enrollment.
Methods
Sources of Data
From the Health Care Financing Administration, we obtained theStandard Analytic File (SAF) for all Medicare patients admittedto hospice programs during 1990 in California, Florida, NewYork, Pennsylvania, and Texas. These five states accounted for27 percent of all Medicare-certified hospice programs (320 providers)and approximately 36 percent of all Medicare beneficiaries in1990. Additional data were obtained from 1990 Medicare ProviderAnalysis and Review (MEDPAR) files; vital-status files containingdates of death for beneficiaries who had died; and Providerof Services (POS) files describing the hospices.
The Cohort
The study cohort consisted of the 6451 adults who were enrolledfor the first time in their lives in a hospice program (coveredby Medicare) between October 1 and December 31, 1990, in thefive states. Using the vital-status files, we obtained follow-upwith respect to mortality through April 1, 1993 (a minimum of27 months of follow-up from the date of enrollment). On thisdate, only 273 patients (4.2 percent of the cohort) were stillalive. For each patient in the cohort, we also obtained dataregarding prior inpatient hospitalizations and calculated ascore on the Charlson comorbidity index19 using informationfrom the MEDPAR files about hospitalizations during the 270days before admission to a hospice. Finally, we obtained informationon the characteristics of the hospice program from the POS file.
Statistical Analysis
We estimated survival in the cohort with the Kaplan–Meiermethod.20 In assessing the relation between diagnosis and thelength of survival after enrollment in a hospice, we used Tukeybox plots, which show the median, interquartile range (the rangefrom the 25th to the 75th percentile for values in the cohort),and "whiskers" for each variable (whiskers are 1.5 times theinterquartile range and spread out from the first and thirdquartiles; by definition, they cannot extend beyond the smallestor largest observed value).21
We performed Cox regression analyses to assess the associationbetween diagnosis and survival while controlling for potentialconfounders and to examine the importance of other variables.In Cox regression, the association between a variable and survivalis expressed as a hazard rate or risk ratio, similar to an oddsratio.22 In this study a risk ratio greater than 1.0 was associatedwith a higher risk of death and therefore with a shorter survivalafter enrollment in a hospice, and a ratio less than 1.0 indicateda lower risk of death and longer survival.
The dependent variable in our analyses was the length of survivalin days. The independent variables included the patient's age,sex, race, and principal diagnosis (defined as the conditionreported in the SAF to be the cause of the patient's admission,indicated by codes from the International Classification ofDiseases, 9th Revision, Clinical Modification23). We groupedprincipal diagnoses into 19 categories, as shown in Table 1.Our taxonomic system reflected both clinical considerationsabout the similarity of diseases and numerical considerationsto ensure that no one category was too large or too small foranalysis. Patients with missing data on race were excluded fromthe regression analysis (n = 166). No data were missing forany of the other variables, except as outlined below for theCharlson score.
Table 1. Survival According to Diagnosis among 6451 Medicare Beneficiaries Enrolled in Hospice Programs.
We used the MEDPAR data from the patients' hospital stays inthe preceding 270 days to develop a Charlson comorbidity scorefor every patient.24 This score ranges from 0 to a theoreticalmaximum of 33 and is based on the presence of certain diseaseswith assigned values. We also developed an adjusted Charlsonscore, which excluded the patient's primary diagnosis at thetime of admission to a hospice, since our intention was to measureand control for the effects of conditions other than the patient'sprincipal diagnosis. There were 1545 patients in the cohort(24.0 percent) who were not hospitalized in the 270 days beforetheir admission to a hospice program; it was thus not possibleto assign them a Charlson score. We dealt with these missingvalues by substituting the mean Charlson score for the patientgroup as a whole and including a dummy variable representingmissing data among the explanatory variables in the regressionmodel.25 The coefficient for this missing-data variable maybe interpreted as the effect of having had no recent hospitalizations.
We developed three measures of the use of resources before admissionto the hospice: the number of hospitalizations in the 270 daysbefore enrollment; the total number of hospital days in the270-day period; and the total number of hospital days in the30 days before enrollment.
Finally, we developed four variables to describe the hospiceproviders: the number of years the program had been in operationas a Medicare provider as of 1990 (range, 1 to 8); the numberof employees ("large" hospices were those with 30 or more employees);the type of provider ("inpatient," defined as a program runby a hospital or by an inpatient nursing facility, or "outpatient,"defined as a program run by a dedicated hospice or by a homehealth agency); and the type of ownership (for-profit, proprietaryvs. nonprofit, voluntary or government).
Results
Characteristics of Medicare Beneficiaries in Hospice Care
The mean (±SD) age of the patients in the cohort was76.4±9.0 years; 92.4 percent of the patients were white,and 50.0 percent were women. Approximately half the patientsin the cohort (49.7 percent) were cared for by large hospices;16.1 percent by for-profit hospices; and 22.8 percent at inpatienthospice programs. Of the patients in the cohort, 80.2 percenthad cancer of some type; lung cancer (21.4 percent), colorectalcancer (10.5 percent), and prostate cancer (7.4 percent) werethe most common diagnoses (Table 1). The patients were verysick; the mean unadjusted score on the Charlson index for the4906 patients for whom this score could be determined was 5.2±3.3,and the mean adjusted Charlson score was 3.8±3.0.
In the 270 days before admission to a hospice program, the patientsaveraged 1.6±1.7 hospital admissions; only 1545 patients(24.0 percent) had no admissions during that 270-day period.The mean total number of hospital days in the 270 days beforeenrollment in a hospice program was 18.3±23.3; 1296 (20.0percent) of the patients spent more than 30 of the 270 daysas hospital inpatients. The mean total number of hospital daysin the 30 days before enrollment in a hospice program was 11.5±13.7.Of the cohort, 1814 patients (28.1 percent) were not hospitalizedfor any part of the 30 days before entering a hospice program;2942 patients (45.6 percent) were hospitalized for at leastpart of the 30 days before enrollment; and 1695 patients (26.3percent) spent the whole month in the hospital. The median lengthsof survival after enrollment in a hospice program for thesethree groups were 43 days, 32 days, and 26 days, respectively(P<0.01 by the Kruskal–Wallis test of the differencein medians among groups).
Survival after Enrollment in a Hospice Program
The median length of survival after enrollment was 36 days (interquartilerange, 12 to 97) (Figure 1). A substantial minority of patients,15.6 percent, died within 7 days of enrollment, and 28.5 percentdied within 14 days. At the other extreme, 14.9 percent livedlonger than 180 days, and 8.2 percent lived longer than a year.The patients who lived more than a year after enrollment weremore likely than those who died sooner to have one of severaldiagnoses: cancer of the female genital tract, breast cancer,stroke, congestive heart failure, dementia, and chronic obstructivepulmonary disease.
Figure 1. Kaplan–Meier Survival Curve for 6451 Medicare Beneficiaries Enrolled in Hospice Programs in 1990.
Survival was measured from the day of enrollment in the hospice program to the day of death.
Disease-Specific Survival
There was substantial variation in both the median length ofsurvival and in the range of survival times according to diagnosis(Figure 2 and Table 1). The median length of survival variedfrom 17 days for patients with renal failure to 77 days forthose with chronic obstructive pulmonary disease (P<0.001by the Kruskal–Wallis test of the difference in mediansamong diagnostic groups) (Table 1). The interquartile rangevaried from 39 days for liver or biliary cancer to 349 daysfor dementia (P<0.001 by Bartlett's test of the differencein the range among diagnoses) (Figure 2). The proportion ofpatients who died within a week varied from 7.1 percent forthose with cancer of the central nervous system to 29.4 percentfor those with renal failure; the proportion of patients whodied more than six months after enrollment varied from 8.8 percentfor liver or biliary cancer to 34.7 percent for dementia (Table 1).
Figure 2. Tukey Box Plots of the Length of Survival According to Diagnosis among 6451 Medicare Beneficiaries Enrolled in Hospice Programs in 1990.
Box plots show the median (center vertical line), interquartile range (the 25th to the 75th percentile [box]), and "whiskers" (whiskers are 1.5 times the interquartile range, spread out from the first and third quartiles, and do not extend beyond the smallest or largest observed value). The diagnostic groups are arranged according to the median length of survival.
The variability of the length of survival among patients withdifferent diagnoses persisted after we controlled for measuredcharacteristics of the patients and the hospice providers (Table 2).Specifically, as compared with patients with lung cancer,and with adjustment for other factors, patients with breastcancer had an 18 percent lower risk of death (hence, longersurvival after enrollment), those with central nervous systemcancer a 17 percent lower risk, those with prostate cancer a15 percent lower risk, those with congestive heart failure a24 percent lower risk, those with dementia a 29 percent lowerrisk, and those with chronic obstructive pulmonary disease a29 percent lower risk. Conversely, those with liver or biliarycancer had a 24 percent higher risk of death (hence, shortersurvival) than those with lung cancer. A joint test of significancefor the variables related to the primary diagnosis providesevidence of the importance of the diagnosis in determining thelength of survival after enrollment (P<0.001).
Table 2. Risk of Death after Enrollment in Hospice Programs, According to Characteristics of Patients and Providers.
Other Factors Associated with Survival
Additional findings in the regression analysis were that menhad a 10 percent higher risk of death (indicating shorter survival)than women, and whites had an 11 percent higher risk than nonwhites(Table 2). In terms of time, the unadjusted median length ofsurvival was 33.5 days for men as compared with 39 days forwomen, and 34 days for whites as compared with 38 days for nonwhites.After we controlled for other factors, age was not associatedwith the length of survival after enrollment in a hospice. Eachpoint on the adjusted Charlson index was associated with a 3percent higher risk of death. Patients cared for by large hospiceshad a 23 percent lower risk of death than others, those in for-profithospices a 10 percent lower risk of death, and those in inpatientfacilities a 14 percent higher risk of death. The unadjustedmedian length of survival was 46 days in large hospices as comparedwith 28 days in small hospices, 52 days in for-profit hospicesas compared with 32 days in not-for-profit hospices, and 39days in outpatient facilities as compared with 26 days in inpatientfacilities.
Discussion
In our study of survival among Medicare patients enrolled inhospice programs, four facts were evident. First, overall survivalwas short, with a median of 36 days. Second, there was substantialvariation in the length of survival after enrollment; many patientssurvived for short periods (less than 7 days) and many for longperiods (more than 180 days), together accounting for 30.5 percentof all patients. Third, there was substantial variation in boththe median survival and the range of survival times accordingto diagnosis. Fourth, there was substantial variation in survivalaccording to the type of hospice provider, even after adjustmentfor a number of characteristics of the patients.
Previous studies of single hospices, both in the United Statesand abroad, have found median survival times of 11 to 30 days,26,27,28,29,30,31,32,33and those based on data from multiple hospices have found survivaltimes of 25 to 35 days.3,10,34 These studies have been limited,however, by their focus on inpatients, by their exclusion ofpatients with diagnoses other than cancer, or by their incompleteor short follow-up or small or nonrepresentative samples. Moreover,previous studies of survival among patients in hospices eitherhave neglected the role of diagnosis33 or have not found a relationbetween diagnosis and the length of survival after enrollment34;some studies, however, have suggested a relation between certaindiagnoses and the timing of patients' referral to hospices.29,35
The duration of survival after enrollment in a hospice is animportant outcome to measure because it is relevant to the qualityand cost of care that patients receive at the end of life. Bothlong and short survival — especially to the extent thatthe length of survival may be due to avoidably early or lateenrollment — may have adverse economic consequences forpayers and cause needless suffering for patients.3,29,36 Forexample, for many patients, short survival after enrollmentin a hospice program may mean that they have made inadequateuse of a desirable type of terminal care and that their hospiceproviders have had inadequate time to learn their needs anddevelop an optimal plan for care. Short survival might alsomean that patients have received costly and possibly unnecessarilyaggressive care for an unduly long period before enrollmentin the hospice. Although patients may have derived benefit fromshort stays in hospices in some cases, earlier referral, tothe extent that it was possible, might have brought even greaterbenefits.
The timing of enrollment, an event that is under the controlof human decision makers, is the fundamental determinant ofthe observed duration of survival in hospices. Although patients,families, and the hospice staff members influence decisionsabout enrollment,7 physicians are critical to this process.Physicians act as gatekeepers, initiate the great majority ofreferrals, and are required to certify that the patient hasa life expectancy of less than six months. Consequently, itmight be possible to modify the survival curve of patients enrolledin hospices by changing the behavior of patients, physicians,or hospice providers. If patients were enrolled earlier andif efforts were directed to reducing the percentages of patientswith especially long or short stays in hospices, it might bepossible to improve the use of hospice care from both the individualand the social perspectives.
Our data demonstrate that the majority of patients enrolledin hospice programs under the Medicare hospice benefit, especiallythose with cancer, are enrolled relatively late in the courseof a terminal illness. Several factors may be responsible forthis fact. For example, patients may resist being told thatthe illness is terminal, and physicians may want to preservehope by postponing referral. The difficulty physicians facein making prognoses probably also has a role. Commentators havenoted that physicians typically make poor judgments about survivalin terminally ill patients; both unduly pessimistic prognoses(with consequent early referral to hospices) and unduly optimisticprognoses (with late referral) may have adverse effects.37,38,39Unfortunately, few studies have examined the process of prognosticationin patients in hospice40,41 or hospital42 settings.
Current Medicare regulations may inadvertently reinforce thelate enrollment of patients by specifying an upper limit tosurvival — that is, by stating only patients with lessthan six months to live are to be referred. However, the factthat short survival at hospices is also seen in countries otherthan the United States,28,31,32,33 where there are differentregulations, suggests the importance of more fundamental factorsrelated to how physicians and patients confront terminal illnessand make predictions about survival. Nevertheless, alternativeprognostic standards, such as requiring that the prognosis be"an average survival of six months" or "a 50 percent probabilityof death in three months," might minimize the possible contributionof Medicare regulations to late enrollment.
Enrolling patients earlier, especially those otherwise destinedto have short stays, might enhance the quality of end-of-lifecare and also prove cost effective. Although an increase inthe median survival due to earlier enrollment would increasethe costs to Medicare of hospice care, it might neverthelessbe cost saving if expensive in-hospital care were supplanted.Of the total hospital days in the 270 days before enrollment,63 percent were during the 30 days just before admission tothe hospice. Moreover, patients with a large number of inpatientdays in the 30 days before enrollment in a hospice tended tohave relatively short survival after enrollment, suggestingthat earlier referral might indeed substitute hospice care formore expensive hospital care. Further work is required to clarifypotential cost savings.
With respect to possible ways to modify the observed survivalpattern, attention should also be paid to the fact that patientsin large and for-profit hospices have relatively long survivalafter enrollment. Because the survival of patients after enrollmentis generally short, because evaluating newly admitted patientsis expensive, and because payment is made on a per diem basis,these observations suggest that such hospices may encouragethe early enrollment of patients as a way to recoup the highup-front costs associated with admission.43 Do such hospiceshave efficient outreach programs or place fewer barriers toenrollment? Do they offer care in such a way that patients,families, and physicians are willing to consider earlier enrollment?Or do they inappropriately admit patients they expect to livemany months after enrollment? Conversely, do they refuse referralsof patients who are near death? If so, how do they identifysuch patients?
Our study has several limitations. First, only patients actuallyenrolled in hospice programs were studied, and hence the timingof enrollment was examined only for such patients. Second, ourstudy sample may not have been representative of all patientsreceiving hospice care; however, Medicare beneficiaries accountfor about 80 percent of patients in hospices. Third, data onthe performance status of patients were not available, but wedid adjust for coexisting conditions and for hospitalizationbefore enrollment. Fourth, using claims data to estimate Charlsonscores has certain unavoidable limitations.44,45 Fifth, we didnot study the duration of illness before enrollment in a hospice.Sixth, we did not measure the use of health care services otherthan inpatient hospital care, such as prescription medicationsor home nursing care. Finally, no information was availableabout the referring physicians or about patients' preferences.
Changes in patterns of enrollment in hospice programs mightreduce expenditures for health care while improving the qualityof care at the end of life. A change in enrollment patterns,however, would require that physicians, patients, and familiesaccept the provision of hospice care earlier in the course ofillness. Our findings thus suggest a need for further investigationof the characteristics of physicians, patients, and hospiceproviders that are associated with the timing of enrollmentin hospice programs. Closer study is needed of the process bywhich patients, families, physicians, and hospice staff membersdecide whether and when to enroll a patient in a hospice program.Better understanding of this process may lead to improved accessto this humane and cost-effective form of terminal care.
Supported by a National Research Service Award Fellowship fromthe Agency for Health Care Policy and Research, by the SorosFoundation Project on Death in America Faculty Scholars Program,by the Warren–Whitman–Richardson Fellowship, HarvardMedical School, and the Boettner Institute of Financial Gerontologyand the McCabe Fund, University of Pennsylvania.
We are indebted to Ms. Wei Chen for expert programming assistancein linking the data files and to Peter D. Friedmann, M.D., M.P.H.,Marshall H. Chin, M.D., M.P.H., and Charles von Gunten, M.D.,Ph.D., for their helpful comments on the manuscript.
Source Information
From the Section of General Internal Medicine, Department of Medicine, and the Department of Sociology, University of Chicago, Chicago (N.A.C.); and the Division of General Internal Medicine, Department of Medicine, and the Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia (J.J.E.).
Address reprint requests to Dr. Christakis at the Section of General Internal Medicine, University of Chicago Medical Center, 5841 S. Maryland Ave., MC 6098, Chicago, IL 60637.
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Medicare Hospice Programs
Roda P. I., Gandhi H., Mor V., Castle N. G., Christakis N. A., Escarce J. J.
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N Engl J Med 1996;
335:1926-1927, Dec 19, 1996.
Correspondence
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A correction has been published: N Engl J Med 1996;335(8):607.
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