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TRENDSNational Trends In Adult Hospice Use: 1991–1992 To 1999–2000
This study examines hospice use among adult hospice patients based on the 1992–2000 National Home and Hospice Care Surveys, the 1997–1999 National Nursing Home Surveys, and the 1991–2000 annual Underlying and Multiple Cause-of-Death Files. The total number of adult hospice patients tripled between 1991–1992 and 1999–2000. The majority of inpatient hospice patients resided in nursing homes. The increased hospice utilization rates and increased percentage of adult hospice patients with short stays in hospice indicate changes in hospice enrollment patterns over time. Hospice is still in the process of growing toward a steady state.
HOSPICE CARE IN the United States has evolved from a "movement" to a "philosophy" to a new medical specialty that emphasizes comfort, pain relief, and emotional and spiritual support for patients certified by a physician to have six months or less of life expectancy. Once enrolled in hospice, patients receive comfort care and forgo all curative treatments for their terminal illness and related conditions. The concept of holistic hospice care was first introduced in this country in the 1960s, but the Medicare hospice benefit was not created until 1982. Although use of hospice services in the United States has increased dramatically over the past twenty years, hospice care is still underused.1 U.S. hospice admissions increased from about 1,000 in 1975 to approximately 700,000 in 2000; however, only 25 percent of Americans who died in 2000 were under hospice care at the time of death.2 Even among Medicare decedents with end-stage cancer diagnoses, only 44 percent used hospice care in 1996.3 Understanding how hospice use has evolved over time can inform future efforts to improve care for terminally ill patients and their families. Previous studies have examined factors associated with hospice use, length of hospice service, and trends in hospice use and costs for Medicare patients.4 However, no studies have examined changes in hospice use rates and length of hospice service use, hospice enrollment patterns, and characteristics of the entire U.S. hospice population over the past decade. Using nationally representative hospice data and national death files, we examined these trends for 1991–2000.
Data sources. Our study examined 9,418 adult hospice patients using data from the National Home and Hospice Care Survey (NHHCS) in 1992, 1994, 1996, 1998, and 2000.5 These data are based on nationally representative samples of home health and hospice agencies and their patients. We also analyzed data on adult nursing home hospice patients from the 1997 and 1999 National Nursing Home Surveys (NNHS), which are also nationally representative.6 In addition, we examined data from the 1991–2000 annual Underlying and Multiple Cause-of-Death Files, which provide cause-of-death information reported by all fifty states and the District of Columbia from 1991 to 2000.7 We assessed the following hospice patient characteristics: age, sex, race, primary payment source at admission, residence during hospice care, and admission diagnoses. We categorized length of hospice service use (admission date was subtracted from discharge/death date) as 0–7, 8–15, 16–30, 31–90, 91–180, or 181 days or more. More than 85 percent of hospice patients died in hospice care, and many who were discharged from hospice died soon thereafter.8 Statistical analyses. We used chi-square tests to examine the significance of changes in distributions of adult hospice patients between 1991–1992 and 1999–2000 at the bivariate level. We estimated the number of adult hospice patients who were discharged or died during each corresponding twelvemonth period (October of the year before the survey year through September of the survey year) by cancer diagnosis, age at admission, and residence during hospice care. We used a chi-square test to examine significant changes in the length of service distribution across the years. Z tests were applied to test the statistical significance of changes in the percentages within each subcategory of length of service use between 1991–1992 and 1999–2000. We calculated the number of adult hospice patients who were discharged or died during each corresponding twelve-month period by their length of hospice service use. From the 1991–2000 annual Underlying and Multiple Cause-of-Death Files, we estimated the number of U.S. nontraumatic deaths during each corresponding twelve-month period described above. Those with traumatic deaths (such as those resulting from homicide, suicide, or motor vehicle accidents) were excluded because they were unlikely to be eligible for hospice care.9 To estimate the adult hospice use rate by length of hospice service use, we divided the number of adult hospice patients who were discharged after a certain length of hospice service use by the number of nontraumatic decedents during the same twelve-month period. The entire analyses were conducted using SAS callable SUDAAN to adjust for the complex sampling design of the NHHCS and the NNHS.10
Characteristics of hospice patients. The percentage of hospice patients age eighty-five and older doubled from 14 percent in 1991–1992 to 26 percent in 1999–2000 (Exhibit 1  ). The percentage with Medicare as their primary payment source increased from almost 63 percent to 79 percent over the study period. The percentage of noncancer hospice patients doubled during this period, and the percentage with Alzheimer’s disease or dementia increased significantly. Also, there was a threefold increase in the percentage of inpatient hospice patients (residing in nursing homes, hospitals, or other inpatient facilities).
Number of patients by cancer diagnosis and age group. The number of adult hospice patients with cancer doubled during the study period, while the number without cancer increased more than fivefold (Exhibit 2 ). There also was a more than fivefold increase in the number of patients who were age eighty-five and older at admission to hospice care during the study period (Exhibit 3). Exhibit 3 also shows a decline in the number of hospice patients ages 18–49 after 1995–1996. In addition, the number of nursing home hospice patients age eighty-five and older doubled from 1996–1997 to 1998–1999 (Exhibit 4).
Number of hospice patients by residence. The total number of adult inpatient hospice patients increased ninefold between 1991–1992 and 1999–2000 and nearly doubled from 1997–1998 to 1999–2000 (Exhibit 5 ).
Length of service use. The length of service use among adult hospice patients changed significantly across the years (Exhibit 6 ). The percentage with 0–7 days of hospice use increased significantly from 1991–1992 to 1999–2000. We also saw significant declines in longer lengths of hospice service use. Although we are unable to determine length of hospice service use among nursing home residents, the number of nursing home hospice patients with long nursing home stays increased over time: 36 percent had stays of more than ninety days in 1996–1997, versus 43 percent in 1998–1999 (data not shown).
Hospice use among decedents. Hospice use rates per 1,000 nontraumatic decedents increased significantly over the period, except for patients with more than 180 days of service use (Exhibit 7 ). However, the hospice use rate among patients with 0–7 days of hospice care rose the most.
Our results demonstrate that the total number of adult hospice patients nearly tripled between 1991–1992 and 1999–2000, while the number of patients age eighty-five and older increased more than fivefold. Rates of hospice use and the percentage of adult hospice patients with short hospice stays increased significantly. Residence during hospice care. Although the total number of adult hospice patients nearly tripled in the 1990s, the number in inpatient facilities increased more than ninefold. Further analyses revealed that the majority of these patients resided in nursing homes rather than in hospitals or other inpatient facilities during 1997–1999. However, because intensity levels in hospice care have risen over the years, the number of inpatient hospice patients outside of nursing homes increased as well.11 The NHHCS and NNHS do not capture whether these hospice patients were nursing home residents before hospice enrollment or whether they were relocated to nursing homes by hospice agencies as inpatients. A report by Susan Miller and colleagues reveals that in the 1992–1996 period, almost 80 percent of hospice patients in nursing homes were residents there before enrolling in hospice.12 Our results show that 36 percent of hospice patients in nursing homes had more than ninety-day stays in 1996–1997, and 43 percent did so in 1998–1999. This suggests that many patients were nursing home residents before they began receiving hospice care. The increases in hospice enrollment among nursing home residents might suggest that more terminally ill nursing home residents are benefiting from hospice care. Hospice patients in nursing homes are less likely to be hospitalized near the end of life and are more likely to receive appropriate pain management than are nonhospice nursing home residents.13 Families of nursing home hospice patients rated residents’ end-of-life care more highly than did families of terminally ill residents without hospice.14 Although the number of nursing home hospice patients increased over the study period, the National Hospice and Palliative Care Organization reports that less than 5 percent of those who died in nursing homes received hospice care in 1998.15 Changes in hospice enrollment patterns. Our results suggest that hospice enrollment patterns have changed during the past decade. We found that during the study period, the percentage of adult hospice patients with 0–7 days of service increased fourteen percentage points and that the hospice use rate among adult patients having 0–7 days of hospice service quadrupled. This latter increase could be related to recent improvements in medical treatments that might have prompted patients to pursue new curative options until shortly before death, resulting in shorter lengths of hospice service use.16 Our results might also indicate the diffusion of hospice care into current medical practice as a new medical specialty, with many patients going into hospice as part of their ordinary care when death is imminent. Researchers, clinicians, and insurance companies have recently realized the importance of palliative care in the earlier stages of the chronic care continuum and are trying to combine life-prolonging treatments when appropriate, palliation of symptoms, and support for caregivers as a potentially more effective form of end-of-life care.17 This open-access approach could remove some barriers to hospice access and affect hospice use in the future. Although recent studies indicate that even very brief hospice stays can be beneficial, symptom management is often difficult to achieve over a week or two.18 Our results show that among adult hospice patients in 1999–2000, only 37 percent had more than thirty days of hospice service, while about half of them had 0–15 days. Although little is known about the optimal length of a hospice stay, earlier hospice enrollment might improve the management of patients’ symptoms and support for family caregivers. Changes in the hospice population. Our results indicate that the percentage of adult hospice patients with Medicare as their primary payer increased and that there was a substantial shift toward the oldest-old (age eighty-five and older). These patients constituted almost one-fourth of all adult hospice patients in 1999–2000. The percentage of hospice patients with noncancer diagnoses or existing Alzheimer’s disease or dementia also greatly increased during this period. We also note that the decrease we found in the number of hospice patients ages 18–49 might be due in part to the improvement in HIV/AIDS treatment after 1995–1996. Hospice care is becoming standard end-of-life care for patients with a variety of terminal diagnoses. Future research and suggestions. Hospice has grown dramatically because of the development of government reimbursement systems and private health insurance coverage and because it meets many basic human needs associated with terminal illness and bereavement. However, in 1998 more than 95 percent of those who died in nursing homes did not receive hospice care; and in 2000 about 75 percent of U.S. decedents did not use hospice services near the time of death.19 Future studies are needed to understand the characteristics and needs of both hospice patients and nonhospice terminally ill patients, to ensure the provision of high-quality care at life’s end. Moreover, researchers need to examine how the quality of hospice care has been affected by the increase in patients with short hospice stays over time. How hospice care is perceived and is used by terminally ill patients and their families is continuing to evolve. Future studies are needed to assess how various emerging approaches to end-of-life care affect hospice use, the benefits received by hospice patients and their families, and the hospice care delivery system.
Beth Han (hih9{at}cdc.gov) is a health scientist at the National Center for Health Statistics (NCHS) in Hyattsville, Maryland. Robin Remsburg is deputy director of the NCHS Division of Health Care Statistics. William McAuley is a professor of sociology and anthropology and communication at George Mason University in Fairfax, Virginia. Tim Keay is director of palliative care at the University of Maryland Greenebaum Cancer Center and the University of Maryland Hospital, both in Baltimore. Shirley Travis is dean of the College of Health and Human Services at George Mason. The authors acknowledge the experience and knowledge shared with them from Sean Morrison at the Mount Sinai School of Medicine as well as from James Lubitz and Jennifer Madans at the National Center for Health Statistics (NCHS). The views presented in this paper are those of the authors and do not necessarily reflect those of the NCHS or its officials.
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