How we die: a new prescription.

• Author: Bienstock, Martin

1. INTRODUCTION II. AUTONOMY IN END-OF-LIFE DECISION-MAKING III. JUDICIAL RESPONSE: FALSE AUTONOMY A. In re Quinlan B. Cruzan v. Director, Missouri Dep't of Health C. Schindler v. Schiavo IV. LEGISLATIVE RESPONSE: FORMALIZING SUBSTITUTED JUDGMENT AND BEST INTERESTS V. TOWARDS TRUE AUTONOMY I. INTRODUCTION

   The dawn of the twenty-first century brought with it a profound change in the way we experience death. Until the last decades of the twentieth century, our bodies died all at once: when the heart, kidneys, lungs, or brain failed, the body's other organs failed with them. Modern medicine now allows us to die in pieces, with failing organs supported or supplanted by technology. (1)

   Modern death is different not only biologically, but also sociologically. Until the twentieth century, death was a private event that took place in the home with the family. (2)" It offered one final opportunity for family members and friends to engage with loving care, to forgive and ask forgiveness, and to relive life events, great and small. (3) Today, death takes place mostly in the hospital, in sterile rooms full of expensive machinery, with patients who are drugged, unconscious, hooked up to machines and unable to speak--even if their bodies were still capable of doing so. Doctors, lawyers, nurses, social workers, ethicists, and family members enter a complex dynamic as treatment decisions are made for the unconscious patient, and therapies are applied or refused. (4)

   Approximately every ten years, (5) a high-profile legal dispute emerges. These disputes pit families, doctors, and elected officials against each other as they seek to resolve ultimate questions of when life ends and death begins. (6) These issues include questions of whether suffering and pain may justify the termination of patient treatment; whether actively terminating a human life is ever acceptable; (7) and whether anyone can determine the proper role of individual autonomy when it conflicts with community values. (8)

   While the debates ebb and flow, millions of ordinary families are forced to confront these issues quietly on their own. (9) Unfortunately, current policies governing end-of-life decision-making fail these families in the most fundamental ways and fail to achieve their most basic objectives.

   In the thirty years since the seminal hi re Quinlan case, personal autonomy has been universally acknowledged as the most important value in the end-of-life process. (10) A consensus has emerged that decisions at the end-of-life are the type of personal, individual choices that can only be made by the affected individual in a pluralistic society such as our own. (11) However, while paying lip service to the value of personal autonomy, courts and legislatures have in fact been imposing their own values and those of family members and close personal friends on the dying process. As a result, dying patients rarely take true control over the decisions in their own dying process.

   While the modern process of dying fails to protect the autonomy of dying patients, it affirmatively places an exceptional and unfair burden on their family members. When they face shock, grief, pain, and uncertainty, family members are often called upon to make profound life-and-death decisions that they have no desire or competence to make, and they must typically make them in a foreign environment and on a moment's notice. (12)

   Considering that physicians are integrally involved in end-of-life decisions, this article discusses a new paradigm that would place on physicians the responsibility to elicit from their patients the moral guidelines that would govern end-of-life decision-making. In the event a patient later became incapacitated, the physician would be responsible to apply these moral guidelines to actual treatment decisions. Part II of this article examines the central role that the ethic of personal autonomy plays in end-of-life decision-making. Part III describes how the courts have conceptually validated that ethic, while ignoring it in practice, by looking at the three seminal end-of-life court decisions of the past thirty years. Part IV examines legislative solutions to end-of-life decision-making and highlight their failings. Finally, Part V looks at a new paradigm for end-of-life decision-making, one centered on the doctor-patient relationship.

2. AUTONOMY IN END-OF-LIFE DECISION-MAKING

   Generally, two competing theories seek to explain ethical decision-making in the modern era. The first, whose principal proponent was Immanuel Kant, relies on autonomy, which is the person's right to govern himself. (13) The second relies on utilitarianism, which requires a decision that achieves the best result for society. (14)

   Once the right of autonomy is granted, an individual has a concomitant responsibility to exercise it in a morally correct fashion, as perceived by the individual. (15) Respect for personal autonomy requires letting the person make decisions for and by himself, no matter how foolish those decisions may be. (16) This value is enshrined explicitly and implicitly in the Declaration of Independence (17) and the Bill of Rights. (18) In the context of end-of-life decisions, autonomy means that individuals have the right and duty to make ethical treatment decisions for themselves. (19)

   Utilitarianism is a competing source of ethical values. Utilitarianism seeks to create the greatest good for the greatest number of people. (20) In the context of end-of-life decision making, utilitarianism means that decisions should be made that are in the best interest of society.

   Defining best-interest in this context, however, requires that a standard be determined as to what most benefits society. If the primary goal is to preserve scarce medical resources, then one type of decision might be made; if the goal is to preserve the sanctity of human life, then another type of decision might be made; if the goal is to reduce human suffering, then still other choices exist. In end-of-life cases, states frequently assert the sanctity of human life as a value that should be applied to end-of-life decision-making. (21)

   An important difference between autonomy and utilitarianism is that autonomy stresses that the individual should make decisions, while utilitarianism focuses on the quality of the decisions that are being made. (22) These competing ethical theories form the context in which important legal issues are debated and decided by the courts. Thus, for example, a state might determine that the sanctity of human life is sufficiently important that a patient's treatment should never be terminated. This utilitarian view might conflict with a particular patient's own view that she has suffered enough and that treatment should end. In that situation, the prevailing view is that the personal autonomy should prevail; right or wrong, the decision is the patient's to make. (23) Only when a patient's view is unknown, should the state's utilitarian views be taken into account. (24)

   Generally, personal autonomy is considered the most important ethical value underlying end-of-life decision-making. (25) The choice of personal autonomy as the most important value in end-of-life decision-making means that ensuring an appropriate process for decision-making is more important than ensuring that decisions are "correct."

   In perhaps its broadest formulation, the United States Supreme Court described this value in the following manner:

   [M]atters involving the most intimate and personal choices a person may make in a lifetime, choices central to personal dignity and autonomy, are central to liberty. At the heart of liberty is the right to define one's own concept of existence, of meaning, of the universe, and of the mystery of human life. Beliefs about these matters could not define the attributes of personhood where they formed under compulsion of the State. (26) Jurists who do not endorse an all-encompassing "right of privacy" nevertheless acknowledge that the constitutional liberty interest extends beyond freedom from physical restraint and into matters of personal choice. (27) These matters of personal choice include a parent's right to send a child to private school, a right to teach a foreign language in a parochial school, a right to many, a right to procreate, and a right to use contraceptives. (28)

   But legal cases are not about abstract values. Such values, as a legal matter, may be insufficient to trump utilitarian values identified by the state unless they are expressed in some form of traditional and long-held right. (29) Perhaps for that reason, courts sometimes defend a person's right to terminate treatment by reference to bodily integrity. (30)

   Courts have long recognized that individuals have the right to bodily integrity, which is the right to control the treatment of one's own body. As Justice Cardozo once described, "[e]very human being of adult years and sound mind has a right to determine what shall be done with his own body." (31) Thus, he held that a patient could properly make a claim in tort when her doctor surgically removed a fibroid after she had consented only to a biopsy. (32)

   By expressing a general moral value as a specific right to treatment, however, we risk conflating two very different rights. Patients have a fundamental right to make general, moral decisions about life and death. They have the right to say: "I do not want to live like that," "I want to fight to the end," "I do not want to be a burden," or "I want to die at home." The decisions are so personal that no one else is equipped to make the decision. (33)

   Patients also have the right to direct their own treatment. They have the right to accept or refuse a dizzying array of treatments that may prolong or shorten their life, increase or reduce their suffering, and interfere with or improve their enjoyment of life. These decisions are not fundamental moral decisions about life and death, but are...