Special Feature: End of Life
The end of life is a uniquely difficult time for patients and their families. Many issues tend to arise, including decisions about medical care, formal and informal caregiving, transitions in living arrangements among community, assisted living, and nursing homes, financial impacts, and whether to use advance directives and living wills. The previous edition of Older Americans identified this topic as one of the urgent data needs for which new data collection efforts are needed to address the lack of knowledge and research. While national data are still lacking in many areas, this special feature will highlight two important aspects of end-of-life care: the place of death and the type of care received (hospice and intensive care unit/coronary care unit [ICU/CCU]) in the month prior to death.
The data on type of care received are derived from Medicare claims records. ICU/CCU use often represents an aggressive style of care, whereas hospice offers a contrasting style emphasizing
palliation and psychosocial support. Many people receive both types of care at the end of life.
- Both hospice and ICU/CCU use are common in the last month of life. In 2009, 43 percent of elderly decedents used hospice services in the last 30 days of life, and 27 percent used ICU/CCU services.
- Use of hospice has increased substantially in recent years, from 19 percent of decedents in 1999 to 43 percent in 2009. Use of ICU/CCU services has grown more slowly, from 22 percent in 1999 to 27 percent in 2009.
- The primary diagnoses associated with hospice care have changed over time. Neoplasms accounted for 53 percent of hospice stays in 1999 and only 32 percent in 2009. The next most common primary diagnoses in 2009 were diseases of the circulatory system (19 percent) and symptoms, signs, and ill-defined conditions (17 percent).
- In 2009, length of stay in hospice varied considerably, with 34 percent lasting 7 days or less and 18 percent lasting more than 90 days. The percent of stays lasting more than 90 days increased from 13 percent in 1999 to 18 percent in 2009.
- Use of hospice services increased with age of decedent. Among women, 38 percent of those dying at age 65–74 received hospice care, compared with 49 percent of those age 85 and over.
- Hospice care was much more common among White decedents than among Black decedents or those of other races. In 2009, 44 percent of White decedents received hospice services in the last 30 days of life, compared with 34 percent of Blacks and 31 percent of decedents of other races.
- In contrast to hospice, the use of ICU/CCU services decreased with increasing age of decedents, especially for those dying at age 85 and over.
- Use of ICU/CCU services tended to be lower among White decedents than among Black decedents or those of other races, while differences within age and sex groups were not always statistically significant. Overall, 26 percent of White decedents used ICU/CCU services in the last 30 days of life compared with 32 percent of Black decedents and 33 percent of decedents of other races.
U.S. death certificates record the place of death of decedents. Where a person dies is the outcome of many factors, including cause of death, personal preferences, cultural beliefs, availability of social support, and access to medical and hospice care, among others. The trends in place of death of older Americans offer insights into the changing nature of end-of-life care in the United States.
- Nearly 1.8 million deaths occurred among persons age 65 and over in 2009. Thirty-two percent of these deaths occurred while the decedent was a hospital inpatient, and 27 percent were in nursing homes or other long-term care facilities. Twenty-four percent of deaths to persons age 65 and over occurred at home.
- The percent of deaths that occurred while the decedent was a hospital inpatient declined over time, from 49 percent of all deaths to persons 65 and over in 1989 to 32 percent in 2009. In addition, the percent of decedents age 65 and over who died at home has increased from 15 percent in 1989 to 24 percent in 2009.
- In 2009, women age 65 and over were more likely than men to die in nursing homes or long-term care facilities (31 percent of female decedents compared with 21 percent of male decedents).
- The place of death for persons age 65 and over varied by race and ethnicity. In 2009, the percent of deaths occurring while a hospital inpatient was lower for non-Hispanic White decedents compared with other racial and ethnic groups. The percent of deaths in a nursing home or long-term care facility was higher for non-Hispanic Whites compared with other groups.
- The percent of decedents dying at home varied only slightly among racial and ethnic groups, with non-Hispanic Black decedents having the lowest percent of deaths at home (21 percent).
- Place of death also varied by age within the 65 and over population. In 2009, 38 percent of decedents age 85 and over died in a nursing home or long-term care facility, compared with 12 percent of decedents age 65–74. Younger decedents were more likely to die while a hospital inpatient compared with older decedents.