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Approaching Death: Improving Care at the End of Life (1997)
Institute of Medicine (IOM)

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symptoms and distress in people approaching death. The term hospice has at least three somewhat different uses that can be confusing and even misleading. First, a hospice may be a discrete site of care in the form of an inpatient hospital or nursing home unit or a freestanding facility. Most care for hospice patients in the United States is, however, provided in the home by family members. Second, a hospice may be an organization or program that provides, arranges, and advises on a wide range of medical and supportive services for dying patients and their families and friends. This meaning is most common in this report. For example, when patients are described as entering hospice care, it means they are affiliating with a hospice program (and, often, qualifying for insurance coverage for care provided by such a program). Less than 20 percent of those who die in the United States are enrolled in hospice programs. The third and most culturally sweeping meaning of hospice encompasses an approach to care for dying patients based on clinical, social, and metaphysical or spiritual principles.

When this report refers to an approach to care rather than to hospice programs or organizations, it generally uses the term palliative care. In a broad sense, palliative care seeks to prevent, relieve, reduce, or soothe the symptoms of disease or disorder without effecting a cure (see, e.g., Random House Dictionary, 1983; American Heritage Dictionary, 1992; Stedman's Medical Dictionary, 1995.)4 Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs. For example, palliation of symptoms may be an important adjunct to life-prolonging therapies, both because the prevention or relief of pain and other symptoms is important for a patient's quality of life and because it may also allow people to begin and complete difficult treatment regimens that they might otherwise not tolerate or follow successfully (MacDonald, 1991). Palliative care, broadly conceived, is also important to those who live with chronic pain or other symptoms.

As an area of academic, scientific, and clinical specialization or empha-

4  

The committee consulted several definitions of palliative care. Many follow that offered by the World Health Organization: "the active total care of patients whose disease is not responsive to curative treatment…[when] control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount" (WHO, 1990, p. 11). Thus, Foley speaks of the active total care of patients whose disease is not responsive to curative treatment (Foley, 1994). Another source refers to the "appropriate medical care of patients with advanced and progressive disease for whom the focus of care is quality of life and in whom prognosis is limited (although sometimes it may be several years)" (Association of Palliative Medicine of Great Britain and Ireland, cited in ABIM, 1996a). Similarly, the definition prepared in Great Britain in 1987 when palliative care was first recognized as a specialty describes palliative medicine as the "study and management of patients with active, aggressive, far-advanced disease for which prognosis is limited and the focus of care is quality of life" (Doyle et al., 1993, p. 3).

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