Overall, the committee is encouraged by recent actions to revise drug prescribing. It urges continued review of restrictive state laws, revision of provisions that deter effective pain relief, and evaluation of the effect of regulatory changes on state medical board policies, physician attitudes and practices, patients, and illegal or harmful drug use.

A series of legal decisions over the past three decades has affirmed the right of people to refuse unwanted medical treatments (President's Commission, 1982; Faden et al., 1986; Appelbaum et al., 1987). As stated in an important 1960 California Supreme Court case, "Anglo-American law starts with the premise of thoroughgoing self-determination," which includes the right of individuals to refuse medical treatments (Natanson v. Kline, 1960). This legal reasoning reinforced a shift in emphasis in medical ethics from a dominant paternalism (i.e., action in the best interest of patients as judged by physicians) toward autonomy (i.e., patients' right to choose the course they prefer) (Childress, 1982).

One means for recognizing patient autonomy in decisionmaking is informed consent, which means that patients voluntarily accept (or refuse) a medical intervention after disclosure of its expected benefits and risks and discussion of the alternatives. For dying patients who are unconscious or in such distress that they cannot reasonably communicate their wishes when a treatment decision needs to be made, the legal concept of informed consent may have limited application.

In response, the concept of advance care planning was devised to allow people (whether or not they are "active patients") to specify how they want to be treated should serious illness or injury leave them without the capacity to make decisions or communicate (see, e.g., President's Commission, 1982; AARP, 1986; Emanuel and Emanuel, 1989; Annas, 1991; Burt, 1994). Documents used in advance care planning, called advance directives, take several forms, including surrogate decisionmaking arrangements and what are popularly called "living wills." For purposes of this report, advance directives refer particularly to statements intended to be legally binding.⁵

As discussed in Chapter 3, advance care planning is a broader, less legally focused concept than that of advance directives. It encompasses not

Front Matter (R1-R18)

Summary (1-13)

1 Introduction (14-32)

2 A Profile of Death and Dying in America (33-49)

3 Caring at the End of Life (50-86)

4 The Health Care System and The Dying Patient (87-121)

5 Accountability and Quality in End-Of-Life-Care (122-153)

6 Financial and Economic Issues in End-Of-Life Care (154-187)

7 Legal Issues (188-206)

8 Educating Clinicians and Other Professionals (207-234)

9 Directions for Research to Improve Care at the End of Life (235-258)

10 Conclusions and Recommendations (259-271)

References (272-312)

Appendix A (313-320)

Appendix B (321-326)

Appendix C (327-357)

Appendix D (358-362)

Appendix E (363-382)

Appendix F (383-399)

Appendix G (400-404)

Appendix H (405-406)

Appendix I (407-412)

Appendix J (413-418)

Index (419-437)