Social Work and End-of-Life Care for Older People: A Historical Perspective
Luptak, Marilyn, Health and Social Work
During the 20th century, vast changes occurred in how Americans die. "Death has become the province of the elderly," wrote Kearl (2000), "with nearly 80 percent of all deaths ... occurring to individuals over 65 years of age (p. 5). Although death is inevitable, social workers can promote respectful treatment at the end of life by addressing concerns such as the inability to maintain dignity and control, inadequate decision making, and suffering (Hanson, Tulsky, & Danis, 1997; Wesley, 1996). In 1993 the National Association of Social Workers (NASW) became one of the first professional organizations to respond to the ethical dilemmas inherent in end-of-life care by issuing a formal policy statement, "Client Self-Determination in End-of-Life Decisions" (NASW, 1994). Based on the principle of autonomy, the statement supports individual choice in all aspects of life and death (NASW, 1994, 1997b).
An enunciated policy statement is a long way from changed practices. In examining social work practices with people at the end of their lives, I was guided by considering how well the profession's activities promote quality of life and care at the end of life. Another organizing issue was the extent to which the social work profession meets the challenge of assisting the largest number of people who die--those who are very old. Thus, this article is a historical analysis of social work's involvement with end-of-life care for older people from the beginnings of organized social work in health care in the late 19th century.
I used historical research methods to trace how organized social work has dealt with (or failed to deal with) the dying process of older people. Taking advantage of the Social Welfare History Archives in the University of Minnesota's library, primary sources were reviewed, including writings of early social work authors. I reviewed all editions of the Social Work Yearbook (later the Encyclopedia of Social Work), published materials of the National Conference on Social Work, tables of contents of social work journals (to track and date references to end-of-life care), "classic" social work literature, and more current textbooks on social work in aging and in health care.
In ancient society, death was considered a process that could not be helped. Rather, the focus was on finding a meaning for death and moving from life to death as comfortably as possible with family and friends of all ages present. Not until the 16th and 17th centuries did the struggle against death emerge, and even then most people died at home, cared for by family (Callahan, 2000). As early social work leaders commented, childhood deaths were common, remaining the norm in 18th and early 19th century agrarian societies, when three-generation families typically lived and died under one roof (Randall & Zeman, 1950-1956).
In the mid-1800s, the roots of modern social work were intertwined with the roots of public health and preventive medicine. Pioneering social worker in aging Ollie Randall (Randall & Zeman, 1950-1956) saw this as a time of "betterment of housing, food, and water supply, working conditions, and methods of medical care" (Box 40, Folder 461, p. 8). As causes of diseases were discovered, hospitals became viable institutions for the study and treatment of sick people, and the dying process became "medicalized." Although Canstatt's medical treatise, "The Diseases of Old Age and Their Treatment" was published in 1839 in Europe, organized medicine, as a whole in Britain and in the United States, was not particularly focused on older people (cited in Randall & Zeman).
Throughout the 20th century, increased longevity, changes in family structure, rapid urbanization, and revolutionary advances in medical technology profoundly influenced American attitudes and policies about end-of-life care (Kaplan, 1995). During the early part of the century, "being old in America was emerging as a social position equated with need" (Dunkle, 1984, p. …