ments include both written or oral questions and visual or figurative elements. Some of these instruments are cited in Appendix F. In addition to their use in assessing and guiding patient care, these instruments also may be useful in monitoring provider performance and evaluating the outcomes of different types of care. As discussed in a later section of this chapter, the development of reliable and valid instruments for measuring other symptoms and determining how they affect patient well-being is a continuing need.

The Problem of Overtreatment

In the context of end-of-life care, overtreatment involves both care that is clinically inappropriate and care that is not wanted by the patient, even if some clinical benefit might be expected. Fear of unwanted treatment at the end of life is an important factor in initiatives promoting advance care planning (Emanuel, 1991; Hill and Shirley, 1992; Solomon et al., 1993). Such fear—and the loss of control it implies—may also contribute to interest in assisted suicide.

Unfortunately, documented preferences do not rule out unwanted care. For example, a study of AIDS patients reported that nearly one in two who wanted care focused on comfort were receiving aggressive curative or life-prolonging treatments (Teno et al., 1991). In a large study of seriously ill hospitalized patients, about 1 patient in 10 was reported to have had care provided that was inconsistent with preferences (Lynn, Teno, et al., 1997), and doctors were often unaware of what patient preferences actually were (SUPPORT Principal Investigators, 1995). Departures from patient preferences sometimes involved more use of life-sustaining interventions than wanted and sometimes less. For the same study, investigators considered rates of medical ventilation, coma, and intensive care unit (ICU) interventions as indicators of possible inappropriate treatment in the last few days of life. In the initial phase of their study, they found that more than a third of the patients spent at least 10 days in the ICU and nearly half received mechanical ventilation during their last 3 days of life.

Another study that surveyed physicians at five hospitals on a number of issues in end-of-life care found that 55 percent of those surveyed felt that they sometimes provided "overly burdensome" treatments to patients, whereas only 12 percent said they sometimes gave up too soon on patients (Solomon et al., 1993, p. 16). Overall, when asked about the inappropriate use (but not inappropriate underuse) of several treatments, a majority expressed concern about mechanical ventilation, cardiopulmonary resuscitation, artificial nutrition and hydration, and dialysis. Each of these interventions has been the subject of considerable debate about the circumstances under which their use promises no or virtually no benefit.

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