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Patient rights and dying: policy restraint and the states.

Every year 2 million people die in America--80 percent of them in hospitals, hospices, or nursing homes. Two-thirds of these deaths result from chronic illnesses such as cancer or heart disease, and approximately 70 percent occur only after a decision is made to forgo life-sustaining treatment. Social workers face no greater humanitarian challenge than assisting these individuals, their loved ones, and their healers in making decisions about dying. The "right to die" has emerged amid an almost unprecedented array of obstacles. Because the doctor-patient relationship is inherently unequal, the construction of policy and regulations affect each quite differently. The application of rights is complicated by ethical questions, the shared nature of family decision making, the lack of clarity regarding who is responsible, and the decision of whether (or when) to withhold treatment or take a more active role in ending a life. Dying has been a policy arena driven by technological advances; by competitive business advantages for providers and producers of medical products; by commitments underwritten by significant public expenditures; and by questions about the competency of the patient, the extent of the medical condition, and the types of treatment or assistance sought. Policy outcomes at any given time are the product of a struggle, "a mediated resultant that emerges when the forces of activism overwhelm the forces of restraint, forcing mediators to act" (Hoefler with Kamoie, 1994, p. xiii). Similar to other polycentric, controversial issues of the past 50 years, the courts have been the leaders on the right to die, whereas legislatures have done their best to avoid it. Although the focal point of attention is family circumstances, a range of social, cultural, political, religious, medical, and scientific forces has mediated the policy-making process. These forces have mostly kept death off the policy agenda, while constraining and shaping its eventual emergence (Hoefler with Kamoie, 1994). In the United States, policies regarding the right to die and how one chooses to die are largely ceded to the states, but policy innovations are diffused among the state courts and legislatures in an often unpredictable fashion. Although the Supreme Court has set a few parameters, state courts have taken the most initiatives by interpreting individual cases, and state legislatures have responded by clarifying intention even more definitively and reluctantly. Policy implementation by administrative bodies, including the management of public health care expenditures, muddies the picture further, whereas social activism occasionally creates sufficient momentum to overcome some of these restraining factors. The results are disjointed, divergent right-to-die policies from one jurisdiction to another. The NASW Code of Ethics (National Association of Social Workers, 1994) places significant value on the principle of client self-determination. Legal frameworks for the protection of the patient's right to make health care decisions, including the right to refuse treatment, are generally found in the philosophical principle of patient autonomy. Constitutionally, this guarantee is derived from the right to privacy and the right to due process under the Fourteenth Amendment, a right originally established in 1914 in a ruling by Judge Benjamin Cardozo that every competent adult has the right to determine what should or should not happen to his or her body (Sloan, 1988). Years later, this right to self-determination in medical treatment was extended to the right to refuse treatment in the case of Nancy Cruzan. A 25-year-old Missouri woman when she was injured in a car accident in 1983, Ms. Cruzan remained comatose, fed by a feeding tube, for eight years while her parents repeatedly requested that it be removed on the grounds that she would not have wished to have her life prolonged in this way. In a concurring opinion in the Cruzan case, Justice Sandra Day O'Connor wrote, "The liberty guaranteed by the Due Process Clause must protect, if it protects anything, an individual's deeply personal decision to reject medical treatment" (Gisleson, 1991, p. …