Death Through the Ages: A Brief Overview - The Modern Age

Modern medicine has played a vital role in the way people die and, consequently, the manner in which the dying process of a loved one affects relatives and friends. With advancements in medical technology, the dying process has become depersonalized, as it has moved away from the familiar surroundings of home and family to the less familiar and sterile world of hospitals and strangers. Certainly, the institutionalization of death has not diminished the fear of dying. Now the fear of death also involves the fear of separation: for the living, the fear of not being present when a loved one dies, and for the dying, the prospect of facing death without the comforting presence of a loved one.

In Dying Well: The Prospect for Growth at the End of Life (New York: G. P. Putnam's Sons, 1997), Dr. Ira Byock, former president of the American Academy of Hospice and Palliative Medicine, noted:

While death may cast a long shadow upon us as we journey through life, Americans typically refuse to notice.… We make jokes about death to diminish its power, using laughter to insulate ourselves from fear. But, then, when death approaches, we are stunned and feel unprepared to deal with the situation we face. We don't know the right thing to do or say, and so we may retreat.… In reflexively turning away from reminders of death, we have at times inadvertently isolated loved ones who needed our presence, and we [have] robbed ourselves of precious opportunities. Socially, we have paid dearly, and culturally, we are poorer for failing to explore the inherently human experience of dying.

Changing Attitudes

Around the turn of the twenty-first 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. An 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 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, where 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 DO MANY CHOOSE HOSPICE?

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. In Dying Well Dr. Byock explains the concept of hospice care:

Hospice care differs noticeably from the modern medical approach to dying. Typically, as a hospice patient nears death, the medical details become almost automatic and attention focuses on the personal nature of this final transition—what the patient and family are going through emotionally and spiritually. In the more established system, even as people die, medical procedures remain the first priority. With hospice, they move to the background as the personal comes to the fore.

Studies show that about 80 percent of terminally ill patients die in a hospital or a nursing home, many of them the objects of overtreatment. The Institute of Medicine's Committee on Care at the End of Life described this overtreatment as involving both care that is inappropriate and 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 percent died while in hospice care. (See Table 1.1.) Nearly 80 percent of hospice patients were 65 years of age and older, and 26.5 percent were 85 years of age or older. Male hospice patients numbered 309,300, while 311,800 were female. The vast majority was white (84.1 percent). Approximately half of the patients served were unmarried, but most of these unmarried patients were widowed. Nearly 79 percent of patients used Medicare as their primary source of payment for hospice services.

TABLE 1.1
Number and percent distribution of hospice care discharges by length of service, according to selected patient characteristics, 2000

			Length of service in days
	Discharges		Percent distribution
Discharge characteristic	Number	Percent distribution	Total	Less than 30 days	30 days or more	Average length of service	Median length of service
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
Race1
White	522,500	84.1	100.0	62.6	37.4	46.7	14.8
Black or African American and other races	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	21.4	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
Private2	80,600	13.0	100.0	64.4	35.6	*49.4	*11.0
Other3	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 agency4	49,000	7.9	100.0	*29.2	70.8	86.2	64.7
Transferred to inpatient care5	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
*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 or is greater than 59, but has a relative standard error of 30 percent or more.
1Prior 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."
2Includes private insurance, own income, family support, Social Security benefits, retirement funds, and welfare.
3Includes unknown source and no charge for care.
4Includes recovered, stabilized, treatment plan completed, no longer eligible for hospice care, and insurance coverage no longer available.
5Includes 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, Centers for Disease Control and Prevention, National Center for Health Statistics, Hyattsville, MD, 2003

Although more than half (57.5 percent) 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.)

THE NATIONAL HOSPICE ORGANIZATION AND PHYSICIAN-ASSISTED SUICIDE.

In 1996 the National Hospice Organization, or NHO (now known as the National Hospice and Palliative Care Organization, or NHPCO), a nonprofit organization created in the 1970s to champion the concept of death with dignity, reaffirmed a 1990 resolution opposing physician-assisted suicide. Responding to the 1997 Supreme Court rulings on physician-assisted suicide, John J. Mahoney, then-president of the NHO, stated:

A stark, and frankly incomplete, picture of end-of-life care has been presented to the public during the debate of assisted suicide. There is a perception that a terminally ill patient must choose between a painful existence devoid of value on one hand and assisted suicide on the other; however, there is another, more appropriate option—hospice care. People cannot make an informed choice unless they fully understand their options. Unfortunately, in the debate about assisted suicide, the option of hospice care is often overlooked.

TABLE 1.2
Number and percentage of hospice care discharges, by primary and all-listed diagnoses at admission, 2000

	Primary diagnosis2		All-listed diagnoses3
Diagnosis	Number of discharges	Percent	Number of diagnoses	Percent
Total	621,100	100.0	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
Malignant neoplasms	357,000	57.5	592,000	46.8
Malignant neoplasms of large ntestine 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 bone, connective tissue and skin	*10,500	*1.7	46,000	3.6
Malignant neoplasm of breast	16,400	2.6	18,000	1.4
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 hematopoietic 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 nervous system and sense organs	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
Heart disease	42,500	6.8	109,200	8.6
Ischemic heart disease	*	*	*21,600	*1.7
Congestive heart failure	23,500	3.8	49,600	3.9
Cerebrovascular 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 genitourinary system	*7,600	*1.2	32,200	2.2
Diseases of the musculoskeletal system and connective 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	*	*	…	…
*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, or the sample size is greater than 59 but has a relative standard error of 30 percent or more.
… Category not applicable.
1Based on the International Classification of Diseases, 9th Revision, Clinical Modification.
2Primary diagnosis is the diagnosis that is chiefly responsible for the discharges's admission to hospice care.
3Up 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, Hyattsville, MD, 2003 [Online] http://www.cdc.gov/nchs/data/nhhcsd/hospicecaredischarges.pdf [accessed May 1, 2004]

In 2001 the second-largest medical organization in the United States—The American College of Physicians–American Society of Internal Medicine (ACP–ASIM)—officially opposed physician-assisted suicide while supporting the concept of hospice care. The organization's formal position paper on this topic, "Physician-Assisted Suicide," was published in the Annals of Internal Medicine's August 7, 2001, issue.

HOSPICE ISN'T THE ANSWER FOR EVERYONE.

Hospice, however, is not for everyone. To some, resorting to hospice seems like giving up hope and succumbing to death. Others might wish to endure their pain and suffering due to their religious or philosophical convictions. Still others might opt for quantity rather than quality of life. This phenomenon was reported by Joel Tsevat, et al., in "Health Values of Hospitalized Patients 80 Years or Older" (The Journal of the American Medical Association, vol. 279, no. 5, February 4, 1998). In this study 414 hospitalized patients ages 80 to 98 were interviewed. Nearly 41 percent were unwilling to exchange any time in their current state of health for a shorter life in excellent health.