Advance directive is the general term used to describe statements given in advance of incapacitating illness regarding how individuals want medical decisions made for them if they become too ill to speak for themselves.
Advance directives come in two basic forms. Proxy advance directives (e.g., a durable power of attorney for health care) designate a surrogate decision maker (usually a spouse or other close family member) to make decisions for the patient when he or she is no longer able. Proxy directives convey the legal right to make treatment decisions for an incapacitated individual, but do not necessarily contain any explicit guidance regarding what those decisions should be. Instructional advance directives, often referred to as living wills, include instructions of some kind about the type of care the individual would like to receive.
The concept of advance directives emerged as modern medical technology made it increasingly possible to prolong the lives of seriously ill individuals. In 1969, attorney Luis Kutner suggested that individuals too ill to make decisions for themselves could maintain their ability to influence the use of life-sustaining medical treatments such as cardiopulmonary resuscitation and artificial nutrition and hydration by documenting treatment wishes before incapacitation in what he termed a “living will.” The crucial legal decision supporting the use of advance directives was a 1990 U.S. Supreme Court case involving a 24-yearold woman named Nancy Cruzan. Ms. Cruzan’s parents sought legal action to remove her from life support after a car accident left her in a persistent vegetative state with no hope for recovery. The U.S. Supreme Court upheld a decision made by the Missouri Supreme Court stating that Cruzan’s parents had the right to terminate treatment for their daughter only if there was “clear and convincing evidence” that this was consistent with Nancy’s prior wishes. An advance directive would meet this legal standard of clear and convincing evidence.
Unlike the more controversial issue of physician assisted suicide, the use of advance directives to refuse unwanted medical treatment near the end of life is endorsed widely by medical associations and supported by U.S. state and federal law. Advance directives have achieved similar levels of acceptance in a number of European countries, although the issue has understandably received little attention in developing countries where medical technology is less available and in many Asian countries where cultural values are less supportive of individual autonomy as an ethical priority in medical decision making.
Although individuals can create their own advance directives without using a previously prepared form, most U.S. states have standard forms (conforming to specific state statutes), as do many organizations interested in the rights of the dying. Some advance directive forms are very specific, recording an individual’s preferences for receiving specific medical treatments in specific medical scenarios. Others are quite general, focusing on documenting general values (e.g., religious) or goals (e.g., maximizing quality rather than quantity of life) that individuals wish to guide their end-of-life care. Verbal statements can also serve as legal advance directives, particularly if the statement is formally recorded by a health care professional (e.g., a do-not-resuscitate, or DNR, order noted on a patient’s hospital chart).
Despite the proliferation of policy and law encouraging the use of advance directives, psychological research has raised significant questions about their ability to improve end-of-life care. Issues in particular need of future research are the stability of preferences for life-sustaining treatment across changes in an individual’s psychological and medical condition, the effectiveness of advance directives in improving the accuracy of surrogate decision making, and cultural, ethnic, and racial differences in the use of advance directives and attitudes toward end-of-life care.
- Ditto, P. H. (2005). Self-determination, substituted judgment and the psychology of end-of-life medical decision In J. Werth & D. Blevins (Eds.), Attending to psychosocial issues at the end of life: A comprehensive guidebook. Washington, DC: American Psychological Association Press. Partnership for Caring, http://www.partnershipforcaring.org
- Rosenfeld, (2004). Assisted suicide and the right to die: The interface of social science, public policy, and medical ethics. Washington, DC: American Psychological Association Press.
- Sass, , Veatch, R. M., & Kimur, R. (1998). Advance directives and surrogate decision making in health care: United States, Germany, and Japan. Baltimore: Johns Hopkins University Press.
- S. Living Will Registry, http://www.uslivingwillregistry.com