Changing Attitudes
In the last decades of the twentieth century, attitudes about death and dying slowly began to change. Aging baby boomers (people born between 1946 and 1964), facing the deaths of their parents, began to confront their own mortality. While medical advances continue to increase life expectancy, they have raised an entirely new set of issues associated with death and dying. For example, how long should advanced medical technology be used to keep comatose people alive? How should the elderly or incapacitated be cared for? Is it reasonable for people to stop medical treatment, or even actively end their lives, if that is what they wish?
The works of psychiatrist Elisabeth Kubler-Ross, including the pioneering book On Death and Dying (New York: Macmillan Publishing Company, 1969), have helped individuals from all walks of life confront the reality of death and restore dignity to those who are dying. One of the most respected authorities on death, grief, and bereavement, Kubler-Ross and her theories have influenced medical practices undertaken at the end of life, as well as the attitudes of physicians, nurses, clergy, and others who care for the dying.
During the late 1960s, medical education was revealed to be seriously deficient in areas related to death and dying. But initiatives underway in the late twentieth and early twenty-first centuries have offered more comprehensive training about end-of-life care. With the introduction of in-home hospice care, more terminally ill people have the option of spending their final days at home with their loved ones. With the veil of secrecy lifted and open public discussions about issues related to the end of life, Americans appear more ready to learn about death and to learn from the dying.
Hospice Care
In the Middle Ages hospices were refuges for the sick, the needy, and travelers. The modern hospice movement developed in response to the need to provide humane care to terminally ill patients, while at the same time lending support to their families. The English physician Dame Cicely Saunders is considered the founder of the modern hospice movement—first in England in 1967 and later in Canada and the United States. The soothing, calming care provided by hospice workers is called palliative care, and it aims to relieve patients' pain and the accompanying symptoms of terminal illness, while providing comfort to patients and their families.
Hospice may refer to a place—a freestanding facility or designated floor in a hospital or nursing home—or to a program such as hospice home care, in which a team of health care professionals helps the dying patient and family at home. Hospice teams may involve physicians, nurses, social workers, pastoral counselors, and trained volunteers.
WHY PEOPLE CHOOSE HOSPICE CARE
Hospice workers consider the patient and family to be the "unit of care" and focus their efforts on attending to emotional, psychological, and spiritual needs as well as physical comfort and well-being. With hospice care, as a patient nears death, medical details move to the background as personal details move to the foreground to avoid providing care that is not wanted by the patient, even if some clinical benefit might be expected.
THE POPULATION SERVED
Hospice facilities served 621,100 people in 2000; of these, 85.5% died while in hospice care. (See Table 1.1. Note: at this writing the National Home and Hospice Care Survey, from which these data are derived, is being redesigned; no new data are available.) Nearly 80% of hospice patients were sixty-five years of age and older, and 26.5% were eighty-five years of age or older. Male hospice patients numbered 309,300, while 311,800 were female. The vast majority was white (84.1%). Approximately half of the patients served were unmarried, but most of these unmarried patients were widowed. Nearly 79% of patients used Medicare as their primary source of payment for hospice services.
Although more than half (57.5%) of those admitted to hospice care in 2000 had cancer (malignant neoplasms) as a primary diagnosis, patients with other primary diagnoses, such as Alzheimer's disease and heart, respiratory, and kidney diseases, were also served by hospice. (See Table 1.2. No new home and hospice care data are available at this writing.)
TABLE 1.1 Hospice care discharges by length of service, according to selected patient characteristics, 2000
| TABLE 1.1 | |||||||
|---|---|---|---|---|---|---|---|
| Hospice care discharges by length of service, according to selected patient characteristics, 2000 | |||||||
| Discharge characteristic | Discharges | Length of service in days | |||||
| Percent distribution | |||||||
| Average length of service | Medican length of service | ||||||
| Number | Percent distribution | Total | Less than 30 days | 30 days or more | |||
| *Data do not meet standard of reliability or precision (sample size is less than 30) and are, therefore, not reported. If shown with a number, data should not be assumed reliable because the sample size is 30-59. | |||||||
| aPrior to 1998, only one race was recorded. Since 1998, more than one race may be recorded. The categories "White" and "Black or African American" include only those discharges for whom that one race was reported. Discharges for whom more than one race was reported are included in "Black or African American and other races." | |||||||
| bIncludes private insurance, own income, family support, Social Security benefits, retirement funds, and welfare. | |||||||
| cIncludes unknown source and no charge for care. | |||||||
| dIncludes recovered, stabilized, treatment plan completed, no longer eligible for hospice care, and insurance coverage no longer available. | |||||||
| eIncludes transferred to hospital, nursing home, or other inpatient or residental care. | |||||||
| Notes: Numbers may not add to totals because of rounding. Percents and average and median lengths of service are based on the unrounded figures. | |||||||
| SOURCE: Barbara J. Haupt, "Table 1. Number and Percent Distribution of Hospice Care Discharges by Length of Service, according to Selected Patient Characteristics: United States, 2000," in "Characteristics of Hospice Care Discharges and Their Length of Service: United States, 2000," Vital and Health Statistics, series 13, no. 154, August 2003, http://www.cdc.gov/nchs/data/series/sr_13/sr13_154.pdf (accessed November 8, 2005) | |||||||
| Total | 621,100 | 100.0 | 100.0 | 62.8 | 37.2 | 46.9 | 15.6 |
| Sex | |||||||
| Male | 309,300 | 49.8 | 100.0 | 66.7 | 33.3 | 42.8 | 14.5 |
| Female | 311,800 | 50.2 | 100.0 | 58.9 | 41.1 | 50.9 | 18.1 |
| Age at discharge | |||||||
| Under 65 years | 126,900 | 20.4 | 100.0 | 64.1 | 35.9 | 43.9 | 15.0 |
| 65 years and over | 494,300 | 79.6 | 100.0 | 62.4 | 37.6 | 47.7 | 16.3 |
| 65-74 years | 153,100 | 24.7 | 100.0 | 65.0 | 35.0 | 41.2 | 16.4 |
| 75-84 years | 176,400 | 28.4 | 100.0 | 62.3 | 37.7 | 50.6 | 16.5 |
| 85 years and over | 164,800 | 26.5 | 100.0 | 60.2 | 39.8 | 50.5 | 15.9* |
| Racea | |||||||
| White | 522,500 | 84.1 | 100.0 | 62.6 | 37.4 | 46.7 | 14.8 |
| Black or African American | 64,300 | 10.3 | 100.0 | 68.5 | 31.5 | 53.6* | 15.8 |
| Black or African American | 50,100 | 8.1 | 100.0 | 66.8 | 33.2 | 61.1* | 14.9* |
| Unknown | 34,400 | 5.5 | 100.0 | 55.5 | 44.5* | 36.7 | 26.8* |
| Marital status at discharge | |||||||
| Married | 293,400 | 47.2 | 100.0 | 67.5 | 32.5 | 40.0 | 11.7 |
| Not married | 289,500 | 46.6 | 100.0 | 58.8 | 41.2 | 54.1 | 18.5 |
| Widowed | 206,400 | 33.2 | 100.0 | 58.7 | 41.3 | 53.5 | 18.4* |
| Divorced or separated | 35,200 | 5.7 | 100.0 | 63.1 | 36.9 | 74.8* | 14.3* |
| Single or never married | 47,900 | 7.7 | 100.0 | 56.3 | 43.7 | 41.5 | 19.5* |
| Unknown | 38,300 | 6.2 | 100.0 | 56.4* | 43.6* | 45.3 | 24.2* |
| Primary source of payment | |||||||
| Medicare | 488,000 | 78.6 | 100.0 | 61.5 | 38.5 | 48.1 | 16.7 |
| All other sources | 133,200 | 1.4 | 100.0 | 67.6 | 32.4 | 42.4 | 10.3* |
| Medicaid | 31,400 | 5.1 | 100.0 | 73.7 | 26.3* | 24.3 | 5.4* |
| Privateb | 80,600 | 13.0 | 100.0 | 64.4 | 35.6 | 49.4* | 11.0* |
| Otherc | 21,100 | 3.4 | 100.0 | 70.9 | 29.1* | 42.5 | 7.0* |
| Reason for discharge | |||||||
| Died | 531,000 | 85.5 | 100.0 | 66.7 | 33.3 | 42.4 | 13.6 |
| Did not die | 90,200 | 14.5 | 100.0 | 39.5 | 60.5 | 73.1 | 43.6* |
| Services no longer needed from agencyd | 49,000 | 7.9 | 100.0 | 29.2* | 70.8 | 86.2 | 64.7 |
| Transferred to inpatient caree | 14,500 | 2.3 | 100.0 | * | 63.9* | 81.7 | 71.0 |
| Other and unknown | 26,700 | 4.3 | 100.0 | 60.2* | 39.8* | 44.4 | 10.0* |
TABLE 1.2 Hospice care discharges, by primary and all-listed diagnoses at admission, 2000
| TALBE 1.2 | ||||
|---|---|---|---|---|
| Hospice care discharges, by primary and all-listed diagnoses at admission, 2000 | ||||
| Diagnosis | Primary diagnosisa | All-listed diagnosesb | ||
| Number of discharges | Percent | Number of diagnoses | Percent | |
| *Figure does not meet standard of reliability or precision because the sample size is less than 30 if shown without an estimate. If shown with an estimate, the sample size is between 0 and 59. | ||||
| …Category not applicable. | ||||
| aPrimary diagnosis is the diagnosis that is chiefly responsible for the discharges's admission to hospice care. | ||||
| bUp to six diagnoses are recorded for each patient at admission. | ||||
| Notes: Numbers may not add to totals because of rounding. Percentages are based on the unrounded numbers. | ||||
| SOURCE: "Table 13. Number and Percentage of Hospice Care Discharges, by Primary and All-Listed Diagnoses at Admission: United States, 2000," National Home and Hospice Care Data, Centers for Disease Control and Prevention, National Center for Health Statistics, 2003, http://www.cdc.gov/nchs/data/nhhcsd/hospicecaredischarges00.pdf (accessed November 8, 2005) | ||||
| Total | 621,100 | 100 | 1,437,500 | 100.0 |
| Infectious and parasitic diseases | 11,400* | 1.8* | 18,900* | 1.3* |
| Human immunodeficiency virus (HIV) disease | 9,400* | 1.5* | 9,700* | 0.8* |
| Neoplasms | 363,000 | 58.4 | 599,300 | 41.7 |
| Mailgnant neoplasms | 357,000 | 57.5 | 592,000 | 46.8 |
| Mailgnant neoplasms of large intestine and rectum | 51,500 | 8.3 | 60,000 | 4.7 |
| Malignant neoplasm of trachea, bronchus and lung | 120,500 | 19.4 | 146,100 | 11.5 |
| Malignant neoplasm of breast | 10,500 | 1.7* | 46,000 | 3.6 |
| Malignant neoplasm of female genital organs | 15,200* | 2.5* | 15,700* | 1.2* |
| Malignant neoplasm of prostate | 20,600 | 3.3 | 33,700 | 2.7 |
| Malignant neoplasm of urinary organs | 15,500 | 2.5 | 26,900 | 2.1 |
| Malignant neoplasm of hemotopoietic tissue | 22,500 | 3.6 | 30,600 | 2.4 |
| Malignant neoplasm of other and unspecified sites | 84,200 | 13.6 | 214,900 | 17.0 |
| Endocrine, nutritional, and metabolic diseases and immunity disorders | * | * | 60,100 | 4.2 |
| Diabetes mellitus | * | * | 47,100 | 3.7 |
| Mental disorders | 23,800 | 3.8 | 58,600 | 4.1 |
| Diseases of the circulatory system | 32,100 | 5.2 | 64,700 | 4.5 |
| Alzheimer's disease | 16,900* | 2.7* | 27,600* | 2.2* |
| Diseases of the circulatory system | 72,900 | 11.7 | 243,100 | 16.9 |
| Hearth disease | 42,500 | 6.8 | 109,200 | 8.6 |
| Ischemic heart disease | * | * | 21,600* | 1.7* |
| Congestive hearth failure | 23,500 | 3.8 | 49,600 | 3.9 |
| Cerebro vascular disease | 16,900 | 2.7 | 37,800 | 3.0 |
| Other diseases of the circulatory system | 29,600 | 4.8 | 83,900 | 6.6 |
| Diseases of the respiratory system | 42,800 | 6.9 | 124,200 | 8.6 |
| Chronic obstructive pulmonary disease and allied conditions | 27,600 | 4.4 | 65,800 | 5.2 |
| Diseases of the digestive system | 12,000 | 1.9* | 36,100 | 2.5 |
| Diseases of the genito urinary system | 7,600 | 1.2* | 32,200 | 2.2 |
| Diseases of the musculoskeletal system and connectiv tissue | * | * | 22,800 | 1.6* |
| Symptoms, signs and ill-defined conditions | 34,800 | 5.6 | 92,900 | 6.5 |
| Supplementary classification | * | * | 23,700* | 1.6* |
| Posthospital aftercare | * | * | 16,600* | 1.3* |
| Unknown or no diagnosis | * | * | … | … |
User Comments Add a comment…