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.

Informed Consent and Advance Care Planning

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


Guardianship involves the court appointment of a decisionmaker in cases where the patient is, for some reason, incompetent to make decisions for him or herself. A guardian is usually appointed for reasons other than health care, such as financial management. State guardianship laws vary on the power of a guardian to consent to or refuse medical treatments. The committee here limits its discussion to decisionmakers appointed by patients themselves.

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