Recent history of end-of-life care and implications for the future
Outcome Assessment (Health Care)
End of life is a critical and changing area of health care. In the mid 1970s, quality of dying was brought to the widespread attention of the American public through the introduction of hospice to the United States, in 1974, 1 and especially by the Quinlan court case, in 1976.2 The image of technology trapping a twenty-one year old woman in a vegetative half-life spurred the "right to die" debate and the living will movement. Just months after the case, California became the first state to enact a living will law. Judicial decisions and legislation continued through the 1980s, including more right-to-die cases at the state level,3 the introduction of the Medicare hospice benefit, and the Patient Self-Determination Act, which passed Congress in 1991. In the 1990s concern about the right to die produced three Supreme Court cases4 and extensive popular attention.5 The decade also saw energetic attempts to improve the quality and reduce the high cost of caring for the dying. Examples include rapid growth in the use of palliative and hospice care,6 funding for improvements to end of life care from private foundations,7 and major studies on end of life.8 The ideal for end-of-life care is to give dying patients comfort, dignity, and a "good death." Polls and studies have shown that the majority of Americans prefer to die at home if possible.9 The popular imagination idealizes death in one's own bed, surrounded by friends and family. At the other extreme, many people dread death in an impersonal hospital ward, bound by multiple intubations and other high technology invasions. The medical humanities have done a particularly good job of finding powerful expressions of these feelings. From medieval woodcuts to neoclassical idealizations of the death of Socrates, we can find images that make death almost attractive by depicting comfort, dignity, and a degree of choice (Figure 1). In contrast, some modern works show the nightmare that invasive life-sustaining care creates in the modern mind.10 Though it would be wrong to care for all dying people according to one rigid model, none should object to the system's making a serene and meaningful death possible for as many terminally ill patients as can have it and want it. Even though the ideal of a "good death" creates a meaningful goal with broad appeal, it leaves many ethical and policy questions unanswered. Different parts of the population have different needs at the end of life and different levels of access to palliative care. Meeting diverse needs and solving problems of unequal access is made all the more challenging because the way dying patients are cared for has been changing for decades, under influences that are not well understood. This chapter is an attempt to introduce the most pressing of these policy and ethical issues, in the context of the major trends and innovations in end-of-life care over the last thirty years of the twentieth century. We will focus on a set of issues that seem certain to affect very large numbers of people. This means that we will not address some very rich issues-like euthanasia-that are of less sweeping importance from a policy standpoint. The setting of death-in a hospital's inpatient bed, at home, in a nursing home, or elsewhere-is a relatively well-tracked national indicator that provides some insight into what end-of-life care in America is like. The first section of this chapter will summarize what changes in place of death can tell us about how care for the dying evolved at the end of the twentieth century. Second, we will discuss changes in policy and practice during the same period, and third, we will discuss the ways in which demographic factors appear to affect end-of-life care. These considerations will lead to a brief discussion of some key ethical and policy questions. What kinds of research are most important for improving the quality of end-of-life care? What kinds of end-of-life care do not currently receive adequate oversight? Does everybody in America have access to the same quality of end-of-life care? Do disparities need to be addressed through policy? How do we balance needs for improving end-of-life care against the financial cost of doing so? Finally, what are going to be the key issues in end-of-life care in the near futur. © 2005 Springer. Printed in the Netherlands.
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