Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor to determine who should make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.

Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life.

Philosophically, the most interesting objection to the reliance on advance directives to guide treatment decisions for formerly competent patients is the argument from the loss of personal identity. Starting with a psychological continuity theory of personal identity, the argument concludes that the very conditions that bring an advance directive into play may destroy the conditions necessary for personal identity, and so undercut the authority of the directive. In this article, I concede that if the purpose of a theory of personal identity is to provide an answer to the question What is it for a person to persist over time?, then reflection on personal identity poses a potentially serious threat to the moral authority of advance directives. However, as Marya Schechtman observes, questions about how a single person persists through change are not what most of us are interested in when we think about who a person is. Rather, we are interested in what it means to say that a particular set of actions, experiences, and characteristics is that of a given person rather than someone else.

Despite clear legislative and judicial support, a well established ethical consensus, and increased efforts at information dissemination and education, proxy decision making for incapacitated patients continues to produce moral muddle and poor resolutions in end-of-life care.

In her analysis of the proxy-doctor relationship, Nancy Dubler spells out the institutionalized patterns that keep the promise of proxy directives so often unrealized. Facing medically complex care of an incapacitated patient, health care teams are apt to view the proxy as a potentially indecisive or unrealistically demanding decision-maker, less a stand-in for the patient than an interloper whose improper, misguided, or self-interested decisions will work against the patient's best interests. So perceived, proxies are routinely relegated to the edges of care planning discussions, left relatively uninformed and unconsulted, and then suddenly thrust center stage to face decisions they find overwhelming. Confronting such decisions, proxies need support and compassion. What they often find is isolation and distrust, a web of professional and institutional practices that trammel their efforts to understand and execute their role.

Medical technology, specialization, and the corporatization of health delivery systems in the late twentieth century have all helped give birth to an unwelcome but unavoidable responsibility for individuals with family or friends—serving as a health care proxy. The responsibility comes without monetary compensation, is often involuntary, and lacks any real guidelines beyond the duty to make life-and-death decisions in circumstances over which the proxy has little control.

The parameters of the proxy's job have evolved somewhat awkwardly in statutes and case law, as lawmakers and judges have tried to apply conventional concepts to novel circumstances. This article examines the legal and functional status of the proxy, as well as the strengths and weaknesses of current public policy as reflected by state advance directive and surrogate decision-making laws. The first section of the article provides a historical perspective of our current notions of agency law as relevant to health care proxies.

The laws and ethical guidelines governing decision making for incompetent patients evolved from controversies in which family members refused life-sustaining interventions. These cases led to a consensus that advance directives to limit interventions should be respected and that a surrogate designated by the patient or specified by statute could refuse interventions, even when other relatives disagreed. Surrogate decision-making statutes and ethical principles about respect for delegated autonomy promote an active role for family members or other surrogates in medical decisions for incompetent patients. Inviting surrogates to participate actively in medical decisions recognizes the importance of the patient's personal community and assures that decisions will reflect the patient's own preferences and values.

The standard approach to decisions for incompetent adults gives advance directives priority over a surrogate's substituted judgment, which in turn has priority over assessments of the patient's best interest. A patient may express advance directives by appointing a proxy, stating specific preferences, or articulating general values. We use case examples to illustrate the limitations of all three types of advance directives.

Mrs. K is a thirty-one-year-old Russian-speaking mother of two, who was brought in by ambulance after attempting suicide by jumping in front of train. Probable depression x months. Stressor: lost custody battle over older child. Current status: deep coma, ventilator-dependent, and prognosis grim. Next of kin is estranged husband; he demands participation in medical decision making. Legal proxy is patient's boyfriend; forcibly removed from the intensive care unit (ICU) for agitated behavior and alcohol intoxication.

I magine the difficulty for the ICU staff as it tries to patch together the broken body of Mrs. K, described above. If, as appears likely, the physicians’ efforts begin to fail, who will speak for this patient, who can no longer speak for herself, and determine the appropriate goals and limits of intensive medical care?

The increase in the scope of international collaborative medical research involving human subjects is raising the problem of whether and how to maintain Western ethical standards when research is conducted in countries with very different social and ethical values. Existing international ethical guidelines for research largely reflect Western concepts of human rights, focusing on the bioethical principles of respect for persons, beneficence, and justice. However, in countries and societies where these values are understood differently or are not expressed in local cultures and institutions, it may be impossible or of no practical value to insert them into the research setting.

In the United States, individual informed consent is considered ethically imperative for research involving human subjects. However, this imperative may be difficult to instill in societies that define persons by their relations to others, and important decisions are commonly made by heads of households or group leaders rather than by individuals. The baseline economic and health care conditions in foreign communities may also create ethical conflicts.