surgical procedures, home birthing, renewed use of midwives, and child-birth education classes represent some responses to medical overreaching. At life's end, hospice and the recognition of a patient's right to refuse treatment likewise are indicative of medicine's need to recognize its limits. More general initiatives to change the nature of caregiving, which have been diverse and occasionally controversial, also may influence care at the end of life. Such initiatives include efforts to

  • employ less invasive or disabling care options such as lumpectomy for certain breast cancers and "watchful waiting" for benign prostatic hypertrophy (see, e.g., Brook et al., 1986; Barry et al., 1988; Wennberg et al., 1988; Jackson, 1990);
  • recognize the value of the caring function of medicine in addition to the curing and life-prolonging functions (see, e.g., Wheeler, 1990; Cassell, 1991; Gerteis et al., 1993);
  • design friendlier environments of care as exemplified in warmer and more welcoming physical spaces, reduced noise levels, and displays of photographs and other personal items in patient or resident rooms (see, e.g., Gerteis et al., 1993);
  • strengthen the quantity and quality of communication with patients and families, respond to requests for patient education, and recognize cultural differences (see, e.g., Greenfield et al., 1985; Koenig and Gates-Williams, 1995; Nelson and Nelson, 1995);
  • develop instruments for assessing patient outcomes and perceptions of their care as a basis for establishing more accountability for clinician and system performance (see, e.g., Ware et al., 1988; Berwick et al., 1990; Gold and Wooldridge, 1995; and Chapter 5 of this report); and
  • incorporate and welcome the contributions of many different health care personnel and of supportive services such as music and art therapy and other psychological approaches (see, e.g., Hurney, 1990; Sourkes, 1991; Connell, 1992; Larsson and Starrin, 1992; Breslow, 1993; Skaife, 1993).

The number and variety of these initiatives reinforce the basic messages that people—not diseases or technologies—are the central concern of health care and that people are much more than their illnesses. These initiatives likewise reinforce—and indeed have shaped and been shaped by—efforts to improve care for those approaching death and to establish palliative care as a legitimate clinical field. One practical challenge to those responsible for activating major changes in health care delivery is to distinguish intellectual or ideological fads from more enduring strategies and shifts in values.

This chapter focuses primarily on the patient, those close to the patient, and those directing and providing end-of-life care. It emphasizes that the experience and fear of unrelieved symptoms are fundamentally important



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement