These process of care elements are, in a sense, statements of expectations for the care system. Most of these elements were discussed in Chapter 3, which emphasized the importance of sympathetic but clear consideration of prognosis and goals and fitting care strategies to circumstances. This chapter considers the major settings of care in which people die and identifies questions about the ways care is structured, provided, and coordinated. It concludes by considering aspirations for an ideal care system and what this implies for the mix of organizations, programs, settings, personnel, procedures, and policies that make up care systems.
Unlike new mothers or women undergoing mastectomies, who have recently been the subject of highly publicized criticisms of early discharge, dying patients are not themselves a potent lobbying group and their survivors are often exhausted, grieving, and expected to put their lives back together and move on. Thus, health care professionals, managers, and others have a particular responsibility to press for care systems that people can trust to serve them well as they die.
Trying to present a coherent picture of health care systems as they serve—or fail to serve—those who are dying is not easy. First, the two million people who die each year have both variable and common characteristics and needs. Second, the organizations and personnel that may be involved in end-of-life care are likewise numerous and variable. Nationally, there are roughly 6,000 hospitals, 16,000 nursing homes, 11,000 to 15,000 home health care and hospice agencies, 650,000 generalist and specialist physicians, 2 million nurses, tens of thousands of social workers involved in health care,1 and numerous other categories of health personnel and facilities including several hundred health maintenance organizations (HMOs) and other managed care and health insurance arrangements. Third, data about care at the end of life are very limited.
Even the term health care system has no fixed meaning. It can be used in at least four different ways—not because people are being careless in their language but because the term is intrinsically general and capable of applying to several situations. First, the term health care system may be used to describe and analyze a community's or region's array of health care
According the U.S. Bureau of Labor Statistics, there were 666,000 "degreed Human Services Workers" in 1995 (Gibelman, 1997), which is the category that includes social workers. The National Association of Social Workers has 160,000 members. The committee did not locate a specific count or estimate of those employed by health-related organizations or otherwise involved in health care rather than other human services.