Does Autonomy Require Informed and Specific Refusal of Life-Sustaining Medical Treatment?
The title of this article assumes that autonomy is desirable, hardly a controversial assumption in this century and this country. But the question to be addressed is not whether it is desirable, but whether it is a self-sufficient principle in the context of medical treatment, specifically in the decision to accept or refuse treatment that can extend lives. To answer that question we will have to look at the roots of the principle, how it has been applied to health care decisions, and whether it provides practical guidance in those matters. The moral adequacy of autonomy has been challenged in recent years,(1) but this article will address only its practical application. If it fails as a practical model, the question that remains is how these decisions should be made, given that they are made every day in every hospital in the country.(2)
Appelbaum, Lidz, and Meisel have described the concept of autonomy as referring to personal freedom of action or the right to do as one pleases, within certain restrictions.(3) They describe the central point of Kant's thoughts on this subject as "the freedom of the individual to pursue the dictates of a self-legislated ethical system."(4) In accord with Mill's view, they write: "Utility would be maximized as long as the individual knew what produced personal happiness and was allowed to act on that knowledge. If the maximization of such individual desires were seen as the main goal of human action, it followed that individuals should be permitted the maximum freedom to pursue this personal happiness, consistent with allowing others that same right."(5) In Kant's own words: "Act so as to treat man, in your own person as well as in that of anyone else, always as an end, never merely as a means."(6)
In American jurisprudence, autonomy is the guiding principle in two parallel streams of law, the constitutional right of privacy (most often described in Brandeis' words as the right to be "let alone"(7)) and the common law theory of self-determination. The law's definition of autonomy in early cases is that of a negative right - a right to be let alone, to have no state interference with one's legitimate private life, or at common law, the right to refuse to have operations performed. Cardozo's description of self-determination in medical matters has been cited so often that it has become a cliche. Nonetheless, it remains the seminal statement.
Every human being of adult years and sound mind has a right to
determine what shall be done with his own body; and a surgeon
who performs an operation without his patient's consent commits
an assault for which he is liable in damages.(8)
More recent cases have emphasized the personal nature of autonomous decisions, defining the concept, for instance, as "self law, the ability to decide an issue without reference to or responsibility to another."(9) The shift from doing nothing without permission to doing what the person would have wanted may reflect not so much a change in thinking as a change in response to new medical capabilities. As medical technology developed, more options became available. When Cardozo wrote, in 1914, the causes of death were quite different from those that are common now. Communicable diseases were prevalent the chronic degenerative disease was much less common.(10) Influenza and pneumonia were the leading causes of death in 1900. By 1976, heart disease, cancer, and cerebrovascular disease had taken over.(11) Lives can now be prolonged in a way that was inconceivable at the beginning of the century. Those facing death are now more likely to be aged and to be suffering from one or more ailments for which some potentially therapeutic treatment may exist.(12) Lives can often be saved, but rehabilitation is not, however, always possible. At least some of the extra …